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International Journal of Nursing Studies 160 (2024) 104891

Contents lists available at ScienceDirect

International Journal of Nursing Studies

journal homepage: www.elsevier.com/locate/ns

Nursing interventions for pediatric patients with cancer and their


families: A scoping review
Josefine Tang Rørbech a,⁎, Pia Dreyer b, Karin Enskär c, Helle Haslund-Thomsen d,e, Claus Sixtus Jensen a,f
a
Department of Paediatrics and Adolescent Medicine, Unit for Research and Development in Nursing for Children and Young People, Aarhus University Hospital, Aarhus N, Denmark
b
Department of Anaesthesiology and Intensive Care, Aarhus University Hospital, Aarhus N, Denmark
c
Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden
d
Clinical Nursing Research Unit, Aalborg University Hospital, Aalborg, Denmark
e
Department of Clinical Medicine, Aalborg University, Aalborg, Denmark
f
Research Centre for Emergency Medicine, Aarhus University Hospital and Aarhus University, Aarhus N, Denmark

a r t i c l e i n f o a b s t r a c t

Article history: Background: Clinical nursing care is an essential element in pediatric oncology. The body of research interventions
Received 14 February 2024 targeting pediatric oncology patients and their families has grown in recent years. However, no reviews are
Received in revised form 28 August 2024 currently available on nursing interventions for pediatric oncology.
Accepted 29 August 2024 Aim: The aim was to develop a comprehensive overview of the available nursing interventions for pediatric oncol-
Available online xxxx
ogy patients and their families, outline the characteristics of the interventions, and identify any knowledge gaps.
Methods: This review was conducted in accordance with the JBI guidelines for scoping reviews. Citations were
Keywords:
Family
retrieved from the following databases: Scopus, PubMed, CINAHL, PsycINFO, and Embase. The following inclusion
Nursing interventions criteria were applied: peer-reviewed studies written in English, Danish, Norwegian, or Swedish from 2000 onward
Pediatric oncology and reporting on pediatric patients with cancer and/or family members of a pediatric patient with cancer who re-
Scoping review ceived non-pharmacological and non-procedural nursing interventions provided by a pediatric oncology hospital
service. Eligible studies were screened by title and abstract, and in full text by two independent reviewers. Critical
appraisal was achieved using the Mixed Methods Appraisal Tool.
Findings: Among 2762 references, 26 studies met the inclusions criteria, comprising 25 unique nursing interven-
tions. 89 % had been published from 2013 onward, reflecting the rapid changes occurring in pediatric oncology
treatment. 36 % were qualitative, 58 % were quantitative and 8 % employed mixed methods. The studies were char-
acterized by considerable diversity in terms of intervention content, components, timing of delivery, and delivery
mode. 60 % of the interventions were targeted parents among whom mothers were highly overrepresented (75 %).
16 % adopted a family-centered focus.
Conclusion: This review contributes to building a more comprehensive understanding of the evidence base within
pediatric oncology nursing research. This field is evolving and holds the potential to support families with child-
hood cancer across various phases of their treatment trajectory. However, a clear need exists to develop and test
interventions with a genuinely family-centered focus, targeting both patients and family members. A considerable
gap exists in reporting of the intervention development process and intervention characteristics. Improving the
reporting of intervention development is needed to enhance research quality and facilitate subsequent adaptation
or upscaling of interventions for use in other populations and contexts.
Tweetable abstract: Nursing interventions can support families with childhood cancer but future intervention
studies need to enhance transparency in reporting @IJNSjournal
© 2024 The Author(s). Published by Elsevier Ltd. This is an open access article under the CC BY license
(http://creativecommons.org/licenses/by/4.0/).

What is already known

• Clinical nursing care is an essential element in pediatric oncology.


• The increasing demand for quality nursing care in this continually
⁎ Corresponding author at: Department of Paediatrics and Adolescent Medicine, Unit
evolving clinical field of pediatric oncology calls for evidence-based
for Research and Development in Nursing for Children and Young People, Aarhus
University Hospital, Palle-Jull Jensens Boulevard 99, 8200 Aarhus N, Denmark. nursing interventions.
E-mail address: [email protected] (J.T. Rørbech). • No review of nursing interventions for pediatric patients with cancer
Social media: @JosefineRbech (J.T. Rørbech). and their families is currently available.

https://doi.org/10.1016/j.ijnurstu.2024.104891
0020-7489/© 2024 The Author(s). Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
2 J.T. Rørbech, P. Dreyer, K. Enskär et al. / International Journal of Nursing Studies 160 (2024) 104891

What this paper adds Several reviews exist on psychosocial interventions for patients
with childhood cancer and their families (Meyler et al., 2010; Steele
• This scoping review contributes to establishing a better understand- et al., 2015; Koumarianou et al., 2021). However, these previous re-
ing of the evidence base in the field of pediatric oncology nursing views mainly focused on interventions provided by psychologists (e.g.,
research. individual and/or group-based cognitive behavioral therapy). Such
• This scoping review found that nursing interventions hold a potential interventions are important. However, the provision of nursing in
to support families with childhood cancer across the cancer continuum. the pediatric oncology setting is quite distinct from interventions fo-
• Improving the reporting of intervention development is necessary cusing on psychology, and the increasing demand for evidence-
to enhance research quality and facilitate subsequent adaptation or based nursing interventions in pediatric oncology is evident
upscaling of nursing interventions. (Weinstein and Henrich, 2013). Both children and families affected
by childhood cancer emphasized the importance of nursing support
1. Background and care during their cancer trajectory (McHaro et al., 2022). In re-
cent years, the body of nursing interventions has grown, with a
Advancements in pediatric cancer diagnostics and treatment proto- great variety of designs and definitions (e.g., family-level interven-
cols have yielded markedly increased survival rates in recent decades. tions, parent educational programs, support models, and communi-
Since the mid-1970s, the ≥ 5-year survival rate has increased from 58 cation tools). The knowledge and experiences of the patients and
% to more than 80 % in high-income countries (Steliarova-Foucher families involved in these nursing interventions provide important
et al., 2017; Lam et al., 2019), leading to a rising number of children insights that may inform the planning and implementation of future
and families living through and beyond a childhood cancer trajectory. pediatric oncology interventions (Jibb et al., 2018). Furthermore,
As cancer treatment continues to evolve, the attention devoted to existing interventions that may be adapted from other clinical con-
acute and late side effects also increases. A major challenge is to mini- texts are a key resource in the development of future interventions.
mize the damages caused by toxicity-inducing treatments and reduce Considering the adjustments and refinements suggested by previous
long-term side effects (Mody et al., 2008; Withycombe et al., 2019). interventionists may provide useful information and facilitate the
Patients with pediatric cancer experience excessive negative physical, optimization of future interventions (Bleijenberg et al., 2018). Iden-
emotional, and social consequences due to cancer and cancer treatment tifying the currently available nursing interventions is an important
(Mooney-Doyle et al., 2020; Darcy et al., 2016). Furthermore, the first step in establishing an evidence base. Another important step
increasingly intensive treatment regimens with multiple, often unpre- is determining any research gaps that need to be addressed. A pre-
dictable and prolonged hospitalizations cause families to live a burden- liminary search of the Cochrane Database of Systematic Reviews,
some and disrupted life, which profoundly affects the functioning of all JBI Evidence Synthesis, MEDLINE, CINAHL, Scopus, and PROSPERO
family members (Erker et al., 2018; Van Schoors et al., 2017). Siblings in was conducted between February 1 and March 8, 2022. The search
families with childhood cancer are particularly vulnerable as they must identified no current or upcoming systematic or scoping reviews on
adapt to multiple changes, including new family roles and unexpected the topic. Given the important role of nurses, building a comprehensive
family disruptions with limited parental support (Long et al., 2018). evidence-based understanding of currently available nursing interven-
Parents are often the patients' primary support as they face demanding tions in pediatric oncology is warranted.
treatment procedures, and parental burnout is reported to occur already The objective of this scoping review was to identify and map avail-
within 6 months of the cancer diagnosis (Koumarianou et al., 2021). able nursing interventions for pediatric patients with cancer and/or
Even several years after a complete remission, feelings of vulnerability their family members. We aimed to provide a comprehensive overview
persist among many family members, showing how profoundly a pedi- of the available nursing interventions and to outline the characteristics
atric cancer treatment course affects family life (Peikert et al., 2018; of the interventions.
Inhestern et al., 2022). These negative short- and long-term impacts of
childhood cancer on patients and family members receive increasing 1.1. Research question
attention, and the importance of comprehensive treatment and care
was amply illustrated in a wide range of previous studies (Wiener • What are the available nursing interventions for pediatric patients
et al., 2020; Steele et al., 2015; Luo et al., 2021). Even so, a recent with cancer and/or their family members provided by pediatric oncol-
umbrella review reported significant shortcomings in oncology ogy hospital services?
care. Among both adult and pediatric cancer populations, the authors • What are the characteristics of the patients and family members who
found unmet needs across a wide range of supportive care domains were included in the nursing interventions?
(Paterson et al., 2023). • What are the main components, timing, and delivery modes of the
In the context of pediatric oncology, a collaborative multidisciplinary nursing interventions?
team is essential in providing quality care (Kazak and Noll, 2015). • What are the main findings from the perspective of the pediatric
Nurses play a central role in these teams (Gunter and Duke, 2018). patients and/or their family members relating to the interventions?
They are the healthcare professionals who most frequently come into • What suggestions are highlighted for further development of
contact with patients and families (Landier et al., 2023). In nurse– interventions?
patient–family interactions, nurses deal with highly complex health
issues on a daily basis and serve as a crucial resource for patients and 2. Methods
family members who are mentally and physically overwhelmed
(Hopia and Heino-Tolonen, 2019). Several studies found that nurses Scoping reviews are a useful methodology in emerging research
were particularly well positioned to identify and manage the support areas and when the aim is to map the breath of available evidence on
needs of this population (Kiernan et al., 2010; McHaro et al., 2022). a given topic (Pollock et al., 2021). As no review of nursing interven-
The increasing demand for quality nursing care in this continually tions was previously conducted in the field of pediatric oncology
evolving clinical field, which requires increasingly complex treatment (Tricco et al., 2016b), we adopted the JBI scoping review methodology
protocols, calls for evidence-based nursing interventions. However, (Peters et al., 2020) and used the Preferred Reporting Items for System-
existing psycho-oncology nursing research has been predominantly ex- atic Reviews and Meta-Analyses extension for Scoping Reviews
plorative. A shift toward translating research results into clinical prac- (PRISMA-ScR) guidelines (Tricco et al., 2018). In line with the JBI guide-
tice is necessary to improve the quality of care for pediatric patients lines, a protocol was developed ahead of this scoping review (Rørbech
and families (Enskar et al., 2015; Zupanec et al., 2023). et al., 2023).
J.T. Rørbech, P. Dreyer, K. Enskär et al. / International Journal of Nursing Studies 160 (2024) 104891 3

2.1. Inclusion and exclusion criteria Finally, to identify more sources, additional citations were tracked
manually in the reference lists of all included studies in a forward and
Peer-reviewed original studies applying qualitative, quantitative backward citation search. The identified studies were assessed for
and mixed method designs were considered for inclusion. Studies eligibility by title and abstract (Hirt et al., 2023). This included
eligible for inclusion were nursing interventions for pediatric oncology any systematic reviews that met the inclusion criteria. Due to time
patients and/or their family members provided by a pediatric oncology limitations, the authors of the papers were not contacted to request
hospital service, in hospitals, outpatient clinics, and other contexts such missing and supplementary data. The final search strategy for
as the home of the patient and/or family. No geographical restrictions PubMed is summarized in Supplementary material Table 1. The
were applied. A broad spectrum of nursing interventions was consid- search strategies for the other databases are available from the au-
ered (e.g., family-level interventions, care activities, educational pro- thors on request.
grams, support models, and communication tools). Inspired by Wright
and Bell's proposed definition of nursing interventions, we included 2.3. Study selection process, source selection, and screening process
interventions only when a nurse was accountable for delivering or
providing the intervention and when the intervention occurred in the All the identified studies were collated and uploaded into the
context of a nurse–patient relationship (Robinson and Wright, 1995). Systematic Review Accelerator software (Accelerator) and duplicates
No restrictions on nurses' educational level were applied. Studies with were removed. For screening, the results were imported into the online
interventions aimed primarily at nurses (e.g., through education with- software Covidence (Covidence, 2021). Following a pilot test compris-
out any nurse–patient interaction) were excluded. Pharmacological ing a sample of 50 studies, titles and abstracts were screened for compli-
and procedure-related interventions were excluded. No restrictions ance with the inclusion criteria by two independent reviewers. Next,
were applied with respect to cancer type or age. Cohorts of pediatric pa- two reviewers assessed in detail the full text of the selected studies to
tients with cancer in survivorship and end-of-life/palliative care were finally establish compliance with the inclusion criteria. A PRISMA flow
excluded. This was done to ensure a clear and manageable scope, chart detailing the selection process is presented in Fig. 1. Any disagree-
while providing recommendations specific to the active treatment ments arising between the reviewers at each stage of the study selection
phase. All family members were included. Thus, no restrictions were ap- process were resolved through discussion.
plied on the recipient of the nursing intervention; studies were included
regardless of whether the intervention targeted a pediatric patient, a 2.4. Quality appraisal
single family member (e.g., a sibling), both parents, or the entire family.
Publications in English, Danish, Norwegian, or Swedish were considered Poor reporting of the content and characteristics of interventions
as these languages are read and understood by the research team. To resulted in a considerable amount of missing data. Therefore, we
capture current oncology treatments and healthcare patterns, studies choose to critically appraise the evidence of all studies using the
published from 2000 onward were included. validated Mixed Methods Appraisal Tool (MMAT) (Hong et al.,
2018). The MMAT is designed to critically appraise the most common
2.2. Search strategy types of study methodologies such as quantitative, qualitative and
mixed-methods studies. Because the studies included in this scoping
The study employed a three-staged search strategy (Peters et al., review had adopted different study designs, such as qualitative, quanti-
2020). First, an initial comprehensive literature search was conducted tative, and mixed methods, the MMAT tool was relevant for our pur-
of MEDLINE, CINAHL, and Scopus to identify relevant articles on the pose. All studies were assessed by two independent reviewers (a
topic. Second, hand searches were made to screen for frequently used research assistant and the first author). Disagreements were solved
keywords in existing reviews on psychosocial interventions (Steele through discussion with a third reviewer (last author). Overall, the
et al., 2015; Meyler et al., 2010; Vasilopoulou et al., 2022; Pai et al., quality of the qualitative studies was good. The overall quality of the
2007; Koumarianou et al., 2021; Coughtrey et al., 2018). The text quantitative studies was moderate, and compromised by small sample
words contained in the titles and abstracts of relevant articles and the sizes, no comparison groups, and a lack of information on intervention
index terms describing the articles were used to develop a full search exposure. See Supplementary material Table 2 for a quality appraisal
strategy containing the PCC elements (Population, Concept and Con- of all included studies.
text) (see Table 1) that aligned with the objective and research ques-
tions (Peters et al., 2020). Third, the result was a systematic search 2.5. Data extraction process
block strategy using the identified keywords and combining them
using the Boolean operators AND/OR. The search strategy was devel- Data from the included studies were extracted by two independent
oped and qualified in consultation with an academic librarian. reviewers (first and last author) using a data extraction tool developed
The strategy, including all identified keywords and index terms, was by the reviewers (Supplementary material Table 3). The extraction
adapted for use in each included database: Scopus, CINAHL (EBSCO), tool was inspired by the Template for Intervention Description and
PubMed, PsycINFO (ProQuest), and Embase. The search was conducted Replication in Healthcare (Hoffmann et al., 2014). The extraction tool
in May 2022 and updated in August 2023. Weekly alerts were set up in was developed by the first author, circulated within the research team,
all the selected databases to inform the authors of any new publications and refined in an iterative process (Pollock et al., 2023). The extracted
meeting the search criteria during the review process. data considered specific details about the intervention components,
participants, timing, intervention duration, stage at which the interven-
Table 1 tion was applied in the cancer trajectory, context (e.g., out-patient
The PPC mnemonic (Population, Phenomenon of interest, Context). clinic, hospital), study methods, and key findings relevant to the review
questions.
PPC Inclusion Exclusion
We piloted the data extraction tool on three randomly selected
Population Pediatric patients with any cancer type Palliative
types of studies with different evidence types (one quantitative, one
and/or family members to a pediatric Survivor
patient with cancer Adult cancer patients qualitative, and one mixed-methods study). After piloting, the ex-
Phenomenon Interventions delivered by nurses Procedural traction sheet was incorporated into Covidence and the data extrac-
of interest Pharmacological tion and consensus process was completed independently by two
Context Provided by a hospital service (hospital Provided by other than reviewers. Disagreements between the two authors were resolved
units, outpatient clinics, home) a hospital services
through discussion.
4 J.T. Rørbech, P. Dreyer, K. Enskär et al. / International Journal of Nursing Studies 160 (2024) 104891

Fig. 1. PRISMA 2020 flow diagram for new systematic reviews which included searches of databases, registers and other sources.
From: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021;372:
n71. doi: https://doi.org/10.1136/bmj.n71. For more information, visit: http://www.prisma-statement.org/.

2.6. Data and result synthesis the interventions were conducted in the US; 20 % (n = 5) in Sweden;
and 8 % (n = 2) in Denmark, Australia, Iceland, and China, respectively.
The extracted data were summarized and charted in order to obtain Finally, 4 % (n = 1) were conducted in Iran, South Korea, Brazil, Canada,
frequencies of the following variables: year of publication, country of or- and Chile.
igin, study design, population characteristics (number of patients, age,
gender, diagnosis, number of family members), and target population 3.2. Study designs and characteristics
of the interventions. The following intervention characteristics were re-
corded: theoretical framework used; duration; timing; delivery mode; 36 % (n = 9) were qualitative, 60 % (n = 15) were quantitative, and
information about the nurses delivering the intervention; intervention 4 % (n = 1) were mixed-methods studies.
type; components; main findings from participants receiving the inter- 78 % (n = 7) of the qualitative studies employed semi-structured in-
vention; and further recommendations, refinements or developments terviews as a data collection method. 33 % (n = 3) combined various
of the interventions. Knowledge gaps were identified and summarized. methods as follows: Landon et al. (2019) used group discussion and
written email responses as data material. West et al. (2015) used videos,
3. Results letters, and interviews. Larsen et al. (2013) used a combination of
participant observations and semi-structured interviews.
A total of 2762 records were retrieved, of which 2695 were excluded 27 % (n = 4) of the quantitative studies were randomized con-
following title and abstract screening. The main reasons for exclusion trolled trials (Park et al., 2023; Ringnér et al., 2023; Yu et al., 2014;
were that the studies adopted either a palliative or a survivorship Haase et al., 2022), 27 % (n = 4) adopted a quasi-experimental design
focus. Full-text screening excluded another 45 studies, leaving 26 stud- (Svavarsdottir and Sigurdardottir, 2006, 2013; Hooke et al., 2019;
ies, of which 25 were unique nursing interventions. Svavarsdottir and Hatami and Hojjati, 2019), and 46 % (n = 7) employed a range of other
Sigurdardottir (2006) and Erla Kolbrún Svavarsdottir (2005) reported designs.
two studies based on the same intervention. Ringnér et al. (2023),
Ringner et al. (2021), and Ringner et al. (2015) also reported very similar 3.3. Characteristics of the patients and family members included in the
interventions in three papers. However, all the studies by Ringnér et al. nursing interventions
were reported using different designs, covering different time slots and
based on different sample sizes, and were therefore all included. Thus, 3.3.1. Patient population
the results presented below are based on the 25 nursing interventions
identified and a summary of included studies is presented in Table 2. 3.3.1.1. Number. A total of 1213 pediatric patients were included in 20
interventions. Five studies failed to report any data on patients. These
3.1. Year and country studies targeted parents or siblings only (Landon et al., 2019; Trondle
et al., 2021; Wilson Smith et al., 2018; Jenholt Nolbris and Ahlström,
The included studies were published from 2005 to 2023 with 88.5 % 2014; Hatami and Hojjati, 2019). The number of pediatric patients
(n = 23) being published as from 2013. Geographically, 25 % (n = 7) of ranged from 3 to 283.
Table 2
Summary of included studies. NA = not available, TF = theoretical framework.

Author(s) (year) Study design Number of Diagnosis Type and main components Aim of intervention Timing in cancer trajectory Key findings
Country participants Age of patients Context and delivery Duration Theoretical framework

Bensink et al. Quantitative Patients (n = 8) Leukemia (n = 2) Discharge education: Video NA Timing: Newly diagnosed: Before first Providing video telephone-based
(2008) Non-randomized Family: NA Sarcoma (n = 3) telephone discharge package hospital discharge post diagnosis discharge support appeared
Australia pilot study Other (n = 3) Home Duration: Over a three-month period feasible.
Age: 2–18 years Video technology there were 20 video telephone links TF: NA
De la Maza et al. Quantitative Patients (n = 102) Leukemia (n = 59) Informational: Individual sessions NA Timing: Newly diagnosed: 15–90 days A structured educational program
(2020) Non-randomized Mother (n = 92) Lymphoma (n = 12) included topics related with cancer post diagnosis was associated with a higher level
Chile experimental Fathers (n = 3) Solid tumor (n = 18) pathophysiology, diagnosis and Duration: 4 h of education, with of knowledge among caregivers of
study Others (n = 7) Other (n = 13) treatment of cancer sessions on 3 consecutive days children with a recent cancer as
Age: 7 years (mean) Context: NA well as improved clinical outcomes.

J.T. Rørbech, P. Dreyer, K. Enskär et al. / International Journal of Nursing Studies 160 (2024) 104891
Face to face TF: NA
Duffy et al. Quantitative Patients (n = 69) Diagnosis: NA Discharge education: Standardized To support safely care for the Timing: Newly diagnosed: Before first Implementation of the checklist
(2021) Nonregulated, Parents (n = 47) Age: NA educational checklist including: child at home following the first discharge post diagnosis was feasible, with moderate
USA quality Diagnosis, resources/accessing care, hospital discharge. Duration: NA fidelity to checklist topics taught
improvement side effect management, basic health across the two sites.
project practices/preventing infection, and TF: The Iowa model of Evidence
home medications Based Practice
Hospital
Face to face
Ellis et al. (2013) Qualitative Patients (n = 3) Diagnosis: NA Psychosocial: Videoconferencing to To keep children better Timing: NA Videoconferencing technologies
Australia Mothers (n = 7) Age: 5–12 years connect the patient to their connected to their home school Duration: Session lasting up to an hour may provide an important tool to
Fathers (n = 1) classrooms and peers during treatment and each, frequency ranged from less than connect childhood cancer patients
HCP (n = 5) Hospital or home rehabilitation and to assist with five times in total to almost daily for a to their classrooms. Primary
Online school reintegration period of several months benefits of these programs were
found to be psychosocial rather
than academic.
TF: NA
Haase et al. Quantitative Patients (n = 110) NA Psychosocial: To reduce parent distress and Timing: NA Adolescent and young adult
(2022) Randomized Mothers (n = 95) Age: 11–24 years improve communication during Duration: 5 × 60 min sessions within groups did not differ significantly
1. Therapeutic music video for AYA.
USA controlled trial Fathers (n = 15) high-risk cancer treatment 6–8 weeks for any of the outcomes.
2. Parents received tailored sessions
(Qualitative For parents, the “self-care and
focused on self-care and fostering
evaluation) communication” intervention was
parent-AYA
successful in raising
communicationHospital and out-
self-awareness and parent
patient clinic
confidence in the short term.
Face to face
TF: RIM and Robb's Contextual
Support Model
Hanghøj et al. Qualitative Patients (n = 10) Leukemia (n = 2) Psychosocial: 5 components based on To meet the current and Timing: Newly diagnosed:1–2 months The program increased the young
(2022) evaluation Mothers (n = 11) Lymphoma (n = 2) 10 domains: long-term needs of young post diagnosis people's autonomy with handling
Denmark design Fathers (n = 2) Solid tumor (n = 3) people with cancer for Duration: Unclear, approx. 20 weeks consultations and deciding on
1. Introduction section with both
CNS (n = 2) psychosocial help and support support from health professionals,
parents and young patient
Other (n = 1) and to strengthen the and the program also met parents'
2. A split visit consultation
Age: 15.4 (mean) opportunity to return to a needs for support for their
3. MDT conference creating individ-
healthy youth after cancer teenager.
ual tailored support package
treatment TF: Integrated Assessment
4. Split visit consultation
Mapping
5. Support package is
effectuatedContext: NA
Face to face
Hatami and Quantitative Patients: NA Diagnosis: NA Informational: Session with topics NA Timing: At least 1 year post diagnosis This model decreases care burden
Hojjati (2019) Quasi- Mothers (n = 36) Age: 5–15 years including child's physiological needs, Duration: 7 sessions (each lasting and enhances patient's
Iran experimental self-concept, family roles, 45 min) for 4 consecutive weeks adaptability to his/her illness.
dependency TF: Roy's model of adaption
Hospital
Face to face

(continued on next page)

5
6
Table 2 (continued)

Author(s) (year) Study design Number of Diagnosis Type and main components Aim of intervention Timing in cancer trajectory Key findings
Country participants Age of patients Context and delivery Duration Theoretical framework

Hockenberry Quantitative Patients (n = 283) Leukemia (n = 163) Discharge education: Two To increase understanding of the Timing: Newly diagnosed: 3 time Parents in both intervention
et al. (2021) Cluster Family: NA Lymphoma (n = 51) components: impact of early discharge points: prior to first hospital groups felt more confident in their
USA randomized trial Solid tumor (n = 57) education for parents of a child discharge, 1 and 2 months post preparedness to care for the child
1. Symptom management worksheet
CNS (n = 12) newly diagnosed with cancer discharge with cancer over time.
describing the most commonly
Duration: NA TF: NA
experienced treatment-related
Age: 9.36 (mean)
physical symptoms, strategies to
reduce symptom distress, and
when and how to contact the can-
cer team
2. Coping and support strategies

J.T. Rørbech, P. Dreyer, K. Enskär et al. / International Journal of Nursing Studies 160 (2024) 104891
accompanied with a worksheet
regarding dealing and coping with
a new cancer diagnosisHospital
and outpatient clinic
Face to face or telephone
Hooke et al. Quantitative Patients (n = 30) Leukemia (n = 7) Physical care: NA Timing: 2 month post diagnosis Children and adolescents did not
(2019) Quasi- Family: NA Lymphoma (n = 11) Duration: unclear, intervention experience a change in physical
1. Assessing the current status of PA
USA experimental Solid tumor (n = 12) delivered during usual care activity during treatment
2. Assessing potential health barriers
pilot study used a Age: 6–18 years TF: NA
to PA
nonrandomized
3. Determine stage of change.
comparative
4. A prescription template was
group design
developed that included recom-
with a historical
mendations on frequency and
control
intensity of PA
5. Providing information on
resources. e.g. Community
resources, inexpensive ways to do
PAHospital
Face to face
Landier et al. Quantitative Patients (n = 105) Leukemia (n = 52) Discharge education: A standardized Increasing the quality of Timing: Newly diagnosed: before first Process for discharge education
(2023) Cohort study Mother (n = 89) Lymphoma (n = 17) discharge teaching checklist, modular discharge teaching provided to discharge post diagnosis changed significantly, parental
USA Father (n = 12) Solid/CNS (n = 36) teaching materials for parents, and parents Duration: NA ratings of readiness for discharge
Others (n = 4) Age: 7.7 (mean) optimized teaching techniques and quality of discharge teaching
Hospital did not differ and remained high
Face to face in both the intervened and
non-intervened groups. Nurse
satisfaction with the quality and
process of discharge education
significantly increased
post-intervention.
TF: Meleis's Transition Theory
Landon et al. Qualitative Patients: NA Diagnosis: NA Psychosocial: Sessions with 3 specific To reduce parent distress and Timing: NA Increased ability to foster a
(2019) Family: NA Age: NA topics: enhance the family Duration: 3 × 60-minute sessions connection with other patients
USA HCP (n = 12) environment, resilience, and and families outside of the study
1. Managing the Chaos: Self Care as
well-being of AYAs with resulted in a greater appreciation
the First Step to Supporting Your
high-risk cancer and their for nurses' role in enhancing
Teen/Young Adult.
parents advocacy for patients and families.
2. How to Listen to and Encourage
TF: NA
Your Teen/Young Adult to Talk.
3. Strategies for Teen/Young Adult
Autonomy Support: Understand-
ing Teen/Young Adult's Ways of
CopingContext: NA
Delivery: NA
Larsen et al. Qualitative Patients (n = 25) Other (n = 25) Informational: Three components: To provide daily support to Timing: NA The FNN intervention was a
(2013) Mothers (n = 20) Age: 7.59 (mean) parents with a child undergoing Duration: 9 h of intervention per family well-accepted intervention
1. Including daily medical informa-
Denmark Fathers (n = 5) HSCT per week for the duration of the child's component and none of the
tion relay
4–6 weeks of hospitalization. parents terminated their
2. Five one-hour educational ses-
participation in this component
sions
prior to the child's discharge.
3. Weekly physical activity
TF: Roy Adaptation Model
sessionsHospital
Face to face
Li et al. (2021) Quantitative Patients (n = 109) Leukemia (n = 109) Informational: A WeChat group NA Timing: NA Effective promotion of the nursing
China Before and after Family: NA Age: 7–14 years established by the nursing staff: Duration: NA ability of parents on children with
study acute leukemia, improvements of
1. At 20:00 every night, intra-group
the living quality of children and
discussions via voice, picture or
reduction of parents' adverse
video to encourage the family
psychological moods.

J.T. Rørbech, P. Dreyer, K. Enskär et al. / International Journal of Nursing Studies 160 (2024) 104891
members to actively communicate
TF: NA
with each other about living and
caring experience
2. At the end of each week, the nurse
in charge conducted the follow-up
through WeChat or
telephoneHome
Online or telephone
Marklund et al. Qualitative Total (n = 16) Other (n = 7) Psychosocial support: Two To create a context for change Timing: Newly diagnosed: One or two Families found help in handling
(2018) Lifeworld Mother (n = 7) Age: 1–15 years components: and to support the creation of weeks post diagnosis their new situation by taking part
Sweden Hermeneutic Fathers (n = 5) new beliefs, new opportunities, Duration: Each session lasted about in the FamHC.
1. Structured conversations
Siblings (n = 3) and new meanings in relation to 60 min and the time span between the A relatively small investment of
2. A summarizing closing
Other (n = 1) problems that the family has conversations was about four weeks. two family conversations and a
letterHospital
described closing letter could have such
Face to face
significance for the families in
their difficult situation.
TF: Family system approach
Jenholt Nolbris Qualitative Patients: NA Diagnosis: NA Informational: To increase sibling knowledge Timing: Newly diagnosed: From The intervention could help
and Ahlmström Siblings (n = 14) Age: NA Two components: about cancer and thus reduce 1 month post diagnosis siblings to become more
(2014) their anxiety Duration: Unclear, 16–28 weeks knowledgeable about the sick
1. Lectures child's cancer diagnosis,
Sweden child's cancer, leading to a realistic
treatment and possible side-
view about treatment, and its
effects
consequences as well as about the
2. A personal reflection
future.
diaryHospital
TF: Person-centered care
Face to face
Park et al. (2023) Quantitative Patients (n = 41) Leukemia (n = 33) Informational: Internet-based To promote family-resilience Timing: NA The program resulted in greater
South Korea Randomized Mothers (n = 41) Lymphoma (n = 8) program: Duration: 4 weeks with 1 interval. Each changes in family resilience in the
controlled trial Age: 10.2 (mean) session lasting 70 min. experimental group than in the
Educational materials and activ-
control group. No changes in
ity sheets handed out in advance.
depression scores.
Session 1. Introduction to the
TF: Walsh's Family Resilience
program and the concept of fam-
Framework
ily resilience.
Session 2. Medical information
about childhood cancer.
Session 3. Family rules and
resources outside the family was
identified.
Session 4. Encourage communi-
cation in the family.Hospital and
home
Face to face and online
Ringner et al. Mixed-method Patients (n = 5) Solid tumor (n = 2) Informational: Sessions assessing To increase support and health Timing: 2–3 month post diagnosis The intervention was feasible. No
(2015) Mothers (n = 4) CNS (n = 3) parents needs and expectations, to families with a child suffering Duration: Three one hour meetings changes were seen in the

(continued on next page)

7
8
Table 2 (continued)

Author(s) (year) Study design Number of Diagnosis Type and main components Aim of intervention Timing in cancer trajectory Key findings
Country participants Age of patients Context and delivery Duration Theoretical framework

Sweden Fathers (n = 4) Age: 4–13 years exploring knowledge gaps, errors, from cancer followed by a shorter follow-up measures of parents' distress.
and confusions. Then representing meeting some days later. Lasted for 9 TF: Person-centered
new information and finally goal weeks representational approach
setting.
Hospital and home
Face to face or telephone
Ringner et al. Qualitative Total (n = 13) Leukemia (n = 7) Informational: To reduce parental distress and Timing: 2–5 months post diagnosis Person-centered information can
(2021) Process Mothers (n = 9) Solid tumor (n = 2) increase satisfaction with care Duration: 4 meetings with mean help bridge information gaps
1. The parent identified topics they
Sweden evaluation Fathers (n = 4) CNS (n = 1) duration 51 min experienced by parents in a child
needed information about.
Age: 2–15 years oncology setting. One-to-one
2. Uncovering parents knowledge
meetings can provide a room to

J.T. Rørbech, P. Dreyer, K. Enskär et al. / International Journal of Nursing Studies 160 (2024) 104891
about the topic
elaborate concerns that may be
3. New information was introduced
difficult to address in a family
about the topic
setting.
4. A summery and discussion about
TF: Person-centered
benefits from new received infor-
representational approach
mation.Home and hospital
Face to face
Ringnér et al. Quantitative Patients (n = 24) Leukemia (n = 13) Informational: Four meetings based To provide person-centered Timing: 2–5 month post diagnosis No differences between the
(2023) Randomized Mothers (n = 21) Solid tumor (n = 8) on 5 key elements: information to parents Duration: Meeting lasted in average 51 intervention and control groups in
Sweden controlled trial Fathers (n = 11) CNS (n = 3) min psychosocial distress outcomes.
a. Assessment of current knowl-
The intervention group had their
edge
Age: 6.6 (mean) knowledge needs about bio
b. Explore knowledge gaps,
physiological and functional
confusion, misconceptions
aspects met to a larger degree than
c. Discus knowledge gaps and its
the control group. Parents in the
potential consequences
intervention group were
d. Introducing new knowledge
significantly more satisfied with
e. Summing up information
the overall information they had
Hospital
received about their child's
Face to face or telephone
disease.
TF: The representational approach
to patient education developed by
Donovan and co-workers
Svavarsdottir Quantitative Patients (n = 10) Lymphoma (n = 1) Informational: 3 components: To increase well-being of Timing: Newly diagnosed: within two For both the mothers and fathers,
and Quasi- Mothers (n = 10) Leukemia (n = 5) parents months post diagnosis a significant difference was found
1. 137 paged informational Web site
Sigurdardottir experimental Fathers (n = 9) Solid tumor (n = 2) Duration unclear: Offered over a period in their levels of well-being after
where parents could access infor-
(2006) CNS (n = 2) of 4–5 months the intervention. The level of
mation about various types of
Iceland Age: 10.88 (mean) usefulness of the intervention
cancer and its effects on families.
varied.
2. Internet support – peer to peer
TF: The Calgary Family
interaction or individually interac-
Intervention Model
tion with researcher.
3. One or two 60–90 minute support
interview(s)Hospital and home
Face to face and online
Svavarsdottir Quantitative Patients (n = 19) Leukemia or Psychosocial: Therapeutic To increase family support and Timing: 2–5 months post diagnosis A significant difference was found
and Quasi Mothers (n = 10) lymphoma (n = 15) conversation interviews: expressive family functioning Duration: 2–3 sessions ranged from on perceived family support after
Sigurdardottir experimental Fathers (n = 9) CNS (n = 2) 45 to 90 min the intervention compared to
1. Drawing a family genogram, fam-
(2013) Other (n = 1) before, as well as on the two
ily tree, and an ecomap in collabo-
Iceland Missing (n = 1) subscales of cognitive and
ration with the families
Age: 0–16 years emotional support.
2. Using therapeutic questions
TF: The Calgary Family
3. Offering recommendations
Intervention Model
4. Offering commendation and
drawing forward family strength.
Hospital and outpatient clinic
Face to face
Trondle et al. Qualitative Patients: NA Diagnosis: NA Physical care: Embrocation, warm To improve patients' well-being Timing: NA Patients and health care providers
(2021) Family: NA Age: NA compresses, poultices, and wraps Duration: NA seem to benefit from integrative
Brazil HCP (n = 12) with essential oils were introduced methods.
into the daily care. TF: NA
Hospital
Face to face
West et al. Qualitative Patients (n = 3) Solid (n = 1) Psychosocial support: Therapeutic Reduce illness suffering Timing: 1 year post diagnosis The family system intervention
(2015) Hermeneutic Mothers (n = 3) CNS (n = 2) conversations in which clinicians Duration: 4–6 clinical sessions over a facilitated lessening of suffering.
Canada phenomenology Fathers (n = 2) Age: >7 years explore family members' illness period of 3 to 6 months TF: Calgary Family Assessment
Siblings (n = 8) experience. Model and Illness Beliefs Model
HCP (n = 3) Hospital

J.T. Rørbech, P. Dreyer, K. Enskär et al. / International Journal of Nursing Studies 160 (2024) 104891
Face to face
Wilson Smith Quantitative Total (n = 22) Diagnosis: NA Discharge education: The aim for the Road to Home Timing: Newly diagnosed: Before first Intervention increased family and
et al. (2018) Improvement Unspecified Age: NA Multicomponent: Teaching board, (RTH) program was to develop discharge nurse satisfaction with discharge
USA project education station, tool kit/bags. interactive patient education Duration: NA education and helped assure that
Hospital methods to engage nurses, families are better prepared to
Face to face clinical team members, parents, safely care for their child at home.
and patients in the new TF: NA
diagnosis cancer education
process
Yu et al. (2014) Quantitative Patients (n = 240) Lymphoma Informational: Multiple components: Improve preschool children Timing: NA The family-centered nursing care
China Randomized Family: NA (n = 168) physical, psychological, and social with cancer's social adaption Duration: 1–12 weeks. Session ranged model improved the SAC of
controlled trial Neuroblastoma interventions. capability (SAC) and quality of from 25 to 60 min children with malignancies
(n = 30) Context: NA life more effectively than in children
Nephroblastoma Delivery: NA subjected to routine nursing care
(n = 24) TF: Family-centered care
Hepatoblastoma intervention model
(n = 18)
Age: 3–7 years

9
10 J.T. Rørbech, P. Dreyer, K. Enskär et al. / International Journal of Nursing Studies 160 (2024) 104891

3.3.1.2. Diagnosis. Clear data on patient diagnoses were reported for 857 themes and included written materials as well as web-based information.
patients. Hereof, 53 % (n = 452) had leukemia, 32 % (n = 270) lym- Two interventions (Li et al., 2021; Svavarsdottir and Sigurdardottir, 2006)
phoma, and 13 % (n = 108) had solid tumors, 3 % (n = 27) had brain involved a social component by encouraging and facilitating peer-to-peer
tumors. 40 % (n = 10) of the studies did not report sufficient data on interactions. The interventions by (Ringner et al., 2015) adopted a person-
the cancer diagnosis. Either it remained unclear how the diagnoses centered approach with a specific focus on providing parents with
were distributed, or unclear data were provided. Thus, data on diagnosis tailored information based on their unique needs.
were unavailable for 356 pediatric patients.
3.4.2. Discharge educational support
3.3.1.3. Age. The age of the pediatric patients included in the interven- 20 % (n = 5) of the interventions were educational and provided in-
tions was reported in a variety of ways. 52 % (n = 13) reported a mini- formation and teaching focused on discharge processes in the diagnostic
mum and maximum age with the broadest range being 0–20 years phase. They mainly focused on enhancing parenting skills in the context
(Larsen et al., 2013), whereas the narrowest range was 3–7 years (Yu of providing care for a child with cancer at home and did so by providing
et al., 2014). 20 % (n = 5) did not report any age data. knowledge about disease- and treatment-related topics, e.g., side effect
management, medication, prognoses, and basic home-care tasks. Three
3.3.2. Family and other target population of these interventions structured the discharge process by incorporating
A total of 683 participants (other than patients) were represented in checklists (Landier et al., 2023; Hockenberry et al., 2021; Duffy et al.,
21 interventions. Four interventions only reported data on patients (Li 2021). One intervention, by Smith et al., had integrated child-friendly
et al., 2021; Yu et al., 2014; Hockenberry et al., 2021; Hooke et al., components, e.g., a teaching board and education station (Wilson
2019), even though the interventions by Li et al. (2021) and Yu et al. Smith et al., 2018). Finally, one intervention had a follow-up component
(2014) also targeted parents. The number of participants (other than that was delivered after discharge (Bensink et al., 2008).
patients) included in the interventions ranged from 8 to 110. For 89 %
(n = 606) of the participants included, the specific participant role 3.4.3. Psychosocial support
was known and distributed as follows: mothers 75 % (n = 455), fathers 28 % (n = 7) of the interventions were supportive and mainly
14 % (n = 82), healthcare professionals 5 % (n = 32), siblings 4 % (n = focused on psychosocial aspects related to childhood cancer. Three
25), and others 12 % (n = 12). Furthermore, for 11 % (n = 77) of the interventions (West et al., 2015; Marklund et al., 2018; Svavarsdottir
participants the role was unknown. and Sigurdardottir, 2013) adopted a family-system approach and em-
Because participant characteristics were reported divergently, we ployed therapeutic conversations to enhance family support and reduce
further analyzed specifically who the interventions targeted. The pre- illness-related suffering. Three interventions (Hanghøj et al., 2022;
dominant target population of the nursing interventions was parents; Landon et al., 2019; Haase et al., 2022) focused specifically on adoles-
60 % (n = 15), among these, two interventions targeted parents with cents and their parents and combined the interventions with compo-
an indirect benefit for their adolescents (Landon et al., 2019; Haase nents tailored to the unique needs of young people. Haase et al. (2022),
et al., 2022). 20 % (n = 5) targeted patients (Trondle et al., 2021; Landon et al. (2019) focused on enhancing parenting skills related to un-
Hooke et al., 2019; Ellis et al., 2013; Yu et al., 2014; Hanghøj et al., derstanding youth's coping skills. Hanghøj et al. (2022) focused mainly
2022). The intervention by Hanghøj et al. (2022) specifically targeted on youth as a target group and applied split visits to provide a safe
young people and partly their parents. 16 % (n = 4) targeted the family space for the youth, separated from their parents.
as a unit (Wilson Smith et al., 2018; Bensink et al., 2008; West et al., One intervention targeted school-aged children exclusively and
2015; Marklund et al., 2018). Among these, West et al. (2015) and adopted a social focus by connecting pediatric cancer patients from
Marklund et al. (2018) had the mother, father and siblings included as the hospital to the school using videoconferencing (Ellis et al., 2013).
family members, although this was only the case in one out of seven fam-
ilies included in the intervention by Marklund et al. (2018). 4 % (n = 1) 3.4.4. Physical care
targeted siblings exclusively (Jenholt Nolbris and Ahlström, 2014). 8 % (n = 2) of the interventions focused mainly on the physical con-
dition of the pediatric patient, and both were implemented into daily
3.4. Main components, timing, and delivery modes of the nursing interventions nursing care practices. One intervention, focused on increasing comfort
by integrating embrocation, warm compresses, poultices, and wraps
The heterogeneity of the interventions and the lack of transparency in with essential oils into daily nursing care (Trondle et al., 2021). The in-
the reporting of the interventions made it difficult to categorize by inter- tervention by Hooke et al. (2019) focused on physical activity coaching
vention type or by intervention content/components. Many interventions and reducing fatigue in children.
combined the content with components targeting social, emotional and/
or information support and provided the intervention as individual con- 3.4.4.1. Time and duration. 40 % (n = 10) of interventions started in the
versational sessions. The number of components of the interventions var- newly-diagnosed phase (0–2 months). Among these interventions, 50 %
ied from one to five, depending on type of intervention, e.g., discharge (n = 5) were delivered before the first discharge after the patient had
education with a checklist as a component (Duffy et al., 2021), and a sup- been diagnosed. 20 % (n = 5) were offered from two to five months
portive intervention with five core components focusing on ten different post diagnosis. 8 % (n = 2) were delivered at least one year after the pa-
domains (Hanghøj et al., 2022). Despite this variety, we identified and tient had been diagnosed. 32 % (n = 8) did not provide any data on the
summarized the following intervention types based on their main timing of delivery.
focus: Informational support, psychosocial support, discharge educational The duration of interventions varied widely and was reported insuf-
support, and physical care. An overview of target populations and study ficiently and in very different ways, e.g., intervention duration ranged
types is presented in Fig. 2 and component details are shown in Table 2. from 16 to 28 weeks (Jenholt Nolbris and Ahlström, 2014), or from 3
to 6 months (West et al., 2015). In 44 % (n = 11) of the interventions,
3.4.1. Informational support data on duration were unclear and six of these studies provided no
44 % (n = 11) of the interventions provided support through an infor- data on duration. Most interventions were delivered as 1–6 sessions.
mational component. These components provided disease-related knowl- Session length varied from 15 to 105 min, with 36 % (n = 9) of sessions
edge on pathophysiology, cancer disease, treatment, and side effects. The lasting approximately 60 min.
supportive components also involved emotional support and were often
based on the participant's individual and/or family needs. These interven- 3.4.4.2. Context and delivery. All interventions were provided by an on-
tions were typically based on a series of individual sessions with different cology hospital service. 44 % (n = 11) were provided at the hospital,
J.T. Rørbech, P. Dreyer, K. Enskär et al. / International Journal of Nursing Studies 160 (2024) 104891 11

Fig. 2. Overview of target population and study type.

12 % (n = 3) combined an inpatient hospital setting with an outpatient intervention type improved clinical outcomes (De la Maza et al.,
oncology clinic, 8 % (n = 2) of interventions were provided in the home 2020), significantly increased knowledge (Ringner et al., 2021; De la
only (remotely delivered), and 20 % (n = 5) combined hospital and Maza et al., 2020; Jenholt Nolbris and Ahlström, 2014), increased family
home (phone, web, and face to face) delivery. 16 % (n = 4) provided resilience (Park et al., 2023), improved parent well-being (Svavarsdottir
no data on the context for intervention delivery. No interventions and Sigurdardottir, 2006), reduced the care burden (Hatami and Hojjati,
were delivered by a nurse visiting the families at home. 2019), and enhanced the capacity for social adaption (Yu et al., 2014).
Furthermore, a family navigator nurse proved useful for parents to a
3.4.4.3. Information on nurses. Considerable variety characterized the child undergoing a stem cell transplant (Larsen et al., 2013). The dis-
educational levels of the nurses delivering the interventions, ranging charge educational interventions enhanced family and nurse satisfac-
from nurse practitioners in pediatric oncology to nurses holding doc- tion (Wilson Smith et al., 2018), increased preparedness for discharge
toral degrees specializing in pediatric oncology. 20 % (n = 5) of the in- (Hockenberry et al., 2021), and improved the quality and process of
terventions did not provide any information on nurses' educational discharge education (Landier et al., 2023). Additionally, structuring
level. 24 % (n = 6) of the studies provided some information on how discharge processes in clinical nursing practice appears feasible (Duffy
the nurses delivering the interventions were trained before initiating et al., 2021; Bensink et al., 2008; Hockenberry et al., 2021). Participating
the interventions. Training ranged from a 1-hour course to a 3-day in the psychosocial intervention increased the young people's sense of
workshop. However, no further details were provided about how the autonomy and met the parent's needs to support their child (Hanghøj
nurses were prepared to deliver the interventions. et al., 2022). The self-care intervention improved parents' confidence,
raised their self-awareness (Haase et al., 2022), and enhanced nurses'
3.4.4.4. Impacts of the interventions. A considerable variety of outcome ability to foster communication among the parents and their child
measures was employed depending on the intervention type. Overall, (Landon et al., 2019). The family-based interventions also provided pos-
the studies reported positive results: The informational supporting itive results by increasing family support, lessening suffering (West
12 J.T. Rørbech, P. Dreyer, K. Enskär et al. / International Journal of Nursing Studies 160 (2024) 104891

et al., 2015), and helping families handle their new life situation member populations, recruitment and retention challenges (Van
(Marklund et al., 2018). Three interventions measured, but did not Driessche et al., 2023), and prioritizing of medical treatment protocols
report, changes in psychosocial distress outcomes (Park et al., 2023; over supportive care (Sugalski et al., 2021). Using the Medical Research
Ringnér et al., 2023; Ringner et al., 2015). Councils' framework for complex interventions in healthcare is recom-
mended and may guide researchers, allowing them to develop, test,
3.5. Main findings from the perspective of the pediatric patients and/or their evaluate, and implement complex interventions in clinical contexts
family members relating to the interventions (Skivington et al., 2021).
Overall, the nursing interventions varied greatly in terms of,
40 % (n = 10) of the interventions comprised perspectives from e.g., type, timing, components, and delivery mode. We found that 40 %
participants. Overall, the participant perspectives included in the inter- of the interventions were applied in the diagnostic phase, within the
ventions were positive and reported as, e.g., valuable (Larsen et al., first two months after the patient had been diagnosed. The diagnostic
2013), greatly needed (Hanghøj et al., 2022), helpful, useful supportive, phase is known to be extremely challenging as a cancer diagnosis causes
important (Ringner et al., 2015), and appreciated (Wilson Smith et al., a cascade of sudden and radical changes in the patients' and their fam-
2018). The participants were grateful, pleased (Jenholt Nolbris and ilies' lives (Rodgers et al., 2016). Information overload in the initial stage
Ahlström, 2014), and satisfied (Bensink et al., 2008) and parents reported of cancer courses is a prevalent phenomenon (Aburn and Gott, 2011).
feeling more competent after receiving the intervention (Hockenberry Therefore, in the diagnostic phase, families are provided with only the
et al., 2021). 60 % (n = 15) did not report information on the perspectives most important information, e.g., symptom management, medication,
of the participants. tube feeding, and monitoring of side effects (Rodgers et al., 2016).
Even so, the diagnostic phase should receive special attention, and it is
3.6. Suggestions highlighted for further development of interventions important to acknowledge the need for support throughout the entire
cancer trajectory.
52 % (n = 13) did not provide any suggestions for further develop- Childhood cancer trajectories are often prolonged and characterized
ment or refinement of their intervention. 16 % (n = 4) provided sugges- by repeated unpredictable hospitalizations and traumatic events
tions related to technology components, e.g., delivering the interventions (Gunter and Duke, 2018). Most families adjust and adapt over time,
via interactive media (Jenholt Nolbris and Ahlström, 2014) or smart- but at different paces (Kazak et al., 2007). Applying timely sensitive
phone (Duffy et al., 2021). 12 % (n = 3) made suggestions relating to interventions is therefore complex and was described as challenging
their target population, e.g., introducing screening and modifying inter- for healthcare professionals (Hocking et al., 2014; Greenzang et al.,
ventions to target high-risk patient/family members (Hanghøj et al., 2023). Furthermore, the current tendency to discharge patients earlier
2022; Larsen et al., 2013; Svavarsdottir and Sigurdardottir, 2013). limits the amount of available time to prepare the families for discharge
Furthermore, 20 % (n = 5) made other intervention-specific recommen- and places more care responsibilities with the families at home (Wilson
dations for refinement (Haase et al., 2022; Wilson Smith et al., 2018; Ellis Smith et al., 2018).
et al., 2013; Ringnér et al., 2023). It is of vital importance to address these emerging issues through
interventions that match the changing conditions in pediatric oncology
4. Discussion care. The discharge interventions identified in this scoping review
appeared feasible and served to increase the quality of nursing care in
In this scoping review, we aimed to identify research papers the early stages of diagnosis (Wilson Smith et al., 2018; Landier et al.,
reporting on nursing interventions available for pediatric patients 2023). Future research should focus on further developing and testing
with cancer and/or their family members. interventions across pediatric oncology settings.
We included a total of 25 interventions delivered by nurses and The need to provide interventions covering a longer period of the
provided by hospital services globally from 2005 to 2023. Notably, 88 % cancer course was also identified in this review. A more prolonged
(n = 23) of the papers were published from 2013 onward potentially approach may contribute to an increased feeling of continuity of care
reflecting a positive trend within pediatric oncology nursing as research and support. However, depending on the intervention type, the nurses'
efforts may be leaning toward conducting intervention studies. How- role varied and the active engagement of the nurses differed greatly.
ever, a substantial need remains for research focusing on nursing aspects Thus, in two interventions, the nurses' role was (only) to establish social
in childhood cancer. This is underpinned by the rapidly advancing diag- contact to peers (Ellis et al., 2013; Li et al., 2021). Whereas, in other
nostic and medical landscape with precision medicine and intensified interventions, the nurse had a more prominent role, e.g., providing
treatment regimens (Langenberg et al., 2021). structured conversations and/or care activities across multiple sessions
Evolving cancer treatments successfully improves survival rates. (Larsen et al., 2013; West et al., 2015). Continuity was explicitly consid-
However, the treatments also entail increasingly complex medical ered in the intervention by Ringner et al. (2021). This intervention com-
care tasks with ensuing acute and long-term consequences (Zupanec prised several sessions delivered over a longer period of time, tailoring
et al., 2023). In this emerging field, nurses have a considerable impact the information given to the parent's unique needs. Establishing thera-
as they support families throughout their cancer course. Additionally, peutic relationships to families is considered important in pediatric
nurses are the healthcare professionals with the most frequent and oncology nursing care (McHaro et al., 2022). While psychosocial nurs-
close contact to families during admissions. The need for the nursing ing care is undoubtedly important, research indicates that psychosocial
discipline to keep evolving within this emerging research field is there- issues in pediatric and adult cancer care alike are overlooked and unmet
fore evident. (Paterson et al., 2023; Lövgren et al., 2020). Modern medical oncology
Considering these facts, the amount of nursing intervention studies care with intensified multimodal treatment limits the nurses' available
published appears rather limited. This finding is consistent with a time and ability to be supportive and present (Cantrell, 2007; McHaro
review by Enskar et al. (2015) that underscored the need for future et al., 2022). The interventions suggested by Marklund et al. (2018),
research studies to transform existing descriptive and explorative Svavarsdottir and Sigurdardottir (2006), and Ringnér et al. (2023)
research results into clinical practice, preferably through intervention may serve to structure the support, ensuring that the support from
studies. Still, intervention research is challenging in any field, and apply- nurses is prioritized and provided meeting the needs of families.
ing interventions within complex clinical settings such as pediatric We identified the target population of the nursing interventions and
oncology increases this complexity, e.g., due to difficulties controlling found that 60 % were parents, resulting in only few interventions being
for confounding factors (Hallberg, 2003), small heterogenic patient provided to the family as a unit. Mothers were highly overrepresented
populations with age and developmental differences, multi-family (75 %). This may be explained by the nature of the cancer course with
J.T. Rørbech, P. Dreyer, K. Enskär et al. / International Journal of Nursing Studies 160 (2024) 104891 13

frequent and often prolonged hospital stays. Cancer treatment Notably, no interventions reported involvement of stakeholders in
profoundly affects daily family routines and causes disruption in the the development process and 60 % of the interventions did not elucidate
whole family system (Darcy et al., 2014). In most countries, one care- their participants' perspectives. Research has emphasized the impor-
giver needs to stay in the hospital while the other takes care of siblings tance of engaging key stakeholders in every stage of health research
and works (Svavarsdottir and Sigurdardottir, 2013). Siblings are consid- (Larsson et al., 2018; Grindell et al., 2022). Including views, knowledge,
ered to be at risk of psychosocial distress when adjusting to childhood and experiences from the target population is critical in implementation
cancer, and evidence highlights the importance of sibling support science and improves acceptability and uptake. Furthermore, stake-
in families with childhood cancer (Woodgate, 2006; Gerhardt et al., holder involvement increases the possibility of meeting the unique
2015) This scoping review identified one intervention specifically needs and preferences of patients and family members (Wiener et al.,
targeting siblings (Jenholt Nolbris and Ahlström, 2014). While this find- 2020, Skivington et al., 2021). Even though the reporting was flawed,
ing should be interpreted with caution because of this review's focus on and intervention outcomes were too heterogenetic to compare and
nursing, it is evident that more attention should be devoted to siblings measure their effect, most interventions were reported to be highly
in future intervention studies (Mooney-Doyle et al., 2021). However, valued and perceived as beneficial by the participants. This finding
it remains unclear what types of support are more beneficial for siblings, was similar across interventions and indicates that nursing interven-
and considering how siblings may be reached by interventions is impor- tions hold a considerable potential to increase the quality of pediatric
tant as contact with siblings is typically restricted to hospital visits oncology care.
(Wawrzynski et al., 2021). One way to include both siblings and other
family members is to provide family-based interventions (Meyler 4.1. Limitations
et al., 2010). In this scoping review, four interventions had the family-
unit as a target group. However, only two interventions included the This scoping review identified nursing interventions for childhood
mother, father, and/or siblings even though the interventions were cancer patients and families in active treatment. Procedural and
intended to comprise the whole family. Doing ‘family’ interventions pharmacological interventions were excluded as were interventions
which include (mostly) mothers and (partly) the sick child may meet provided to childhood cancer survivors and palliative patients. Thus,
the needs of individual family members rather than catering to the potentially promising interventions were not considered even though
needs of the whole family (Wood, 2005). A review by Mattila et al. we are aware that, e.g., palliative care is not applied exclusively in the
(2009) on nursing interventions for adult patients and their family end-of-life/non-curative stages. We have focused specifically on cancer
members reported a similar finding; the interventions targeted the diagnosis, knowing that interventions for children and adolescents with
patient and one family member, excluding other family members. The rare diseases might be applicable to childhood cancer families. Not all
family as a social system is complex and diverse, and most health the included studies reported the original intervention as some studies
research for children and young people is primarily based on the in- rather reported experiences of participating in interventions. Further-
volvement of parents. However, such stakeholder perspectives cannot more, we focused on nursing interventions as a mono-disciplinary ac-
replace the qualities that come with genuine participation by the children tivity, thereby excluding interventions delivered by a multidisciplinary
and young people themselves. Thus, developing interventions based team, which may hold a potential for further intervention development.
on family system theories that include child-centered components, as However, we applied a broad search strategy and thus considered nurs-
suggested in the interventions by Wilson Smith et al. (2018), may ing interventions regardless of the terminology applied, e.g., programs,
contribute to more comprehensive care targeting all family members. models, checklists, or tools. In line with the scoping review methodol-
Our review revealed major deficiencies in the reporting of the ogy, this is considered a strength as it maximizes the inclusion of
interventions. In particular, intervention descriptions and details on relevant studies (Peters et al., 2020). Unpublished studies were not
the development process were limited. In general, missing data charac- considered. Gray literature may be a source of potential nursing inter-
terized various data charting items. Most studies lack transparency with ventions provided globally by oncology units. However, due to time con-
regard to timing, duration, target group, and, surprisingly, also the pur- straints, the gray literature was not considered in this review. Thus, this
pose of the intervention. The reason for this maybe explained, in part, by review provided a comprehensive overview of the evidence in current
the objectives of the studies as they evaluated the corresponding inter- nursing research studies rather than the nursing interventions currently
ventions qualitatively (Hanghøj et al., 2022; Landon et al., 2019). How- being performed globally as part of daily nursing practices.
ever, in most studies, no cross-referencing was used to cite the original
intervention, making it difficult to retrieve further information and ulti- 5. Conclusion
mately reducing our ability to adapt the interventions for use in other
contexts. In addition, 52 % of the studies did not provide any suggestions This review contributes to establishing a more comprehensive un-
for further refinement or adjustment of the interventions. The tendency derstanding of the evidence base in the field of pediatric oncology nurs-
toward lack of transparency and under-reporting of intervention devel- ing research. A total of 25 nursing interventions were identified and
opment is a well-known problem and may constitute a major obstacle their characteristics were outlined. Considerable variety was observed
to conducting quality intervention research (Hoffmann et al., 2014; with respect to intervention type. The more prevalent type was sup-
Tricco et al., 2016a). Clear reporting is important for interpreting and portive interventions with an informational focus, provided to mothers
translating intervention research into clinical practice. Recently, guide- in the diagnostic phase. The growing population of pediatric patients
lines were published to ensure a more comprehensive and transparent and their family members who live with and beyond childhood cancer
approach to systematically reporting intervention descriptions and warrants comprehensive and sustainable nursing interventions seeking
development processes (Hoffmann et al., 2014; Duncan et al., 2020; to further strengthen the evidence base of nursing research. Practice,
Möhler et al., 2015). We encourage future intervention studies to policy makers, as well as funding agencies must acknowledge the
adhere to these guidelines. Enhancing the reporting by sufficiently importance of nursing research to strengthen the evidence base and
describing interventions increases the possibility of adapting or repli- thus improve families' access to high-quality effective interventions.
cating interventions (Hoffmann et al., 2014). This may, in turn, improve This review offers a foundation that may serve to inform future inter-
research sustainability and reduce potential research waste. However, vention development provided within pediatric oncology services.
the considerable amount of unchartable data did not reflect the research Nursing interventions have potential to improve oncology care quality
quality. The critical appraisal of the included studies revealed an overall and strengthen evidence-based practices. Considerable heterogeneity
good quality of the qualitative studies, whereas the quantitative studies was found with regard to terminology, application, and reporting. We
were more varied in quality. highly recommend that future intervention studies aim to enhance
14 J.T. Rørbech, P. Dreyer, K. Enskär et al. / International Journal of Nursing Studies 160 (2024) 104891

transparency and recommend engaging in continuous efforts to develop disease and paediatric clinical outcomes during the first year of treatment. Eur.
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