A Swedish perspective on nursing and psychosocial research in paediatric oncology: A literature review.

European Journal of Oncology Nursing xxx (2014) 1e8

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European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon

A Swedish perspective on nursing and psychosocial research in paediatric oncology: A literature review €r a, b, *, Maria Bjo € rk b, d, Susanne Knutsson a, c, Mats Granlund a, b, Karin Enska Laura Darcy b, c, Karina Huus a, b €nko €ping University, Sweden School of Health Sciences, Jo €nko €ping University, Sweden CHILD Research Group, Jo c Department of Health Science, University College Borås, Sweden d €vde, Sweden School of Life Science, University of Sko a

b

a b s t r a c t Keywords: Cancer Caring science Childhood Literature review Nursing Psychosocial

Purpose: A dramatic improvement in outcomes of survival rates of childhood cancer has been seen. Caring science research is central in providing skills and knowledge to the health care sector, but few overviews of the content of published research have been carried out. The aim of this review was to investigate the content and methodology of published studies in paediatric oncology relevant to caring science, and also to compare possible differences in content and method of the published studies from the nursing and psychosocial perspectives. Method: A systematic literature review was performed of 137 published articles on paediatric oncology relevant to caring science in Sweden. Results: The results show that most of the studies were descriptive or comparative ones with a quantitative design. Most of them focused on parents (43%) or children (28%). Most of the studies investigated wellbeing (88%), using questionnaires (54%) or interviews (38%). Several different measurement instruments had been used. While the results were often clearly presented, the clinical implications were more diffuse. The most acknowledged research fund was the Swedish Childhood Foundation (75%). Conclusions: To reflect the children' perspectives in paediatric oncology require that future researchers take on the challenge of including children (even young ones) in research. The use of a limited number of agreed measurement instruments is desirable. The biggest challenge for the future is to make a shift from explorative to intervention studies. There is an urgent need to transform research results into clinical practice. © 2014 Elsevier Ltd. All rights reserved.

Introduction

sector. In the latest government research bill (Regeringens proposition 2008/09:50), caring science research was presented as a strategic research area (SFO) with additional funding being allocated to the area. In 2010, the government commissioned the Swedish Research Council to conduct an evaluation into the field and submit recommendations for the future of Swedish caring science research. The international expert scientific panel concluded that the Swedish Government could be proud of much of the ongoing research activity in this field. The panel was impressed with the research staffing and infrastructure, research activities and outputs, and future plans and collaborations. However, areas for improvement were identified, such as; more clinically relevant research, research collected into fewer but larger clusters, and the establishment of interdisciplinary projects (Swedish Research Council, 2010).

Over the past 40 years, the five-year survival rates of children and adolescents with cancer have risen dramatically in Sweden (and other countries), with improvement largely attributed to more effective treatment (Gustafsson et al., 2007). However, further improvements in both survival rates and quality of survival can still be achieved (Reaman, 2004). According to the Swedish government, caring sciences research is central to enhancing skills and knowledge to the health care

* Corresponding author. Department of Nursing, School of Health Sciences, €nko €ping University, PO Box 1026, S-551 11 Jo € nko € ping, Sweden. Jo E-mail address: [email protected] (K. Ensk€ ar). http://dx.doi.org/10.1016/j.ejon.2014.10.013 1462-3889/© 2014 Elsevier Ltd. All rights reserved.

€r, K., et al., A Swedish perspective on nursing and psychosocial research in paediatric oncology: A Please cite this article in press as: Enska literature review, European Journal of Oncology Nursing (2014), http://dx.doi.org/10.1016/j.ejon.2014.10.013

€r et al. / European Journal of Oncology Nursing xxx (2014) 1e8 K. Enska

2

“Research in Caring Sciences emanates from a multiscientific and multiprofessional perspective which includes preventive, supportive, caring and rehabilitative actions” (Government Bill 2008/09:50 p.85). One area of caring sciences emphasizes social and behavioural science, and includes relevant theories and methods (the Psychosocial perspective) to be utilised. An important field of study is the interaction between staff, patients and their family/significant others. The individual's resources for keeping and regaining optimal health, as well as his/hers ability to adjust to change in health status, is another important focus for research. Supportive resources for individuals and their families within the health care system are also of great interest, particularly in palliative care or when such resources are found to be lacking. Finally, research concerning quality of care, cultural aspects, health care organizing and education is also within the scope of the caring sciences (the Nursing perspective) (Department of Public Health and Caring Sciences (IFV), Uppsala University, 2013). In early 1990's, a survey to identify research priories for paediatric oncology nursing, was carried out by the Association of Pediatric Oncology Nurses. The priorities were primarily about paediatric procedures and psychosocial care needs of patients and their families. The top priority was to; measure the quality of life and late effects of treatment in long-term survivors of childhood cancer (Hinds et al., 1994). Since the 1990s, the body of researchbased knowledge in paediatric caring sciences has been increasing. Early work focused on symptom relief related to the side effects of chemotherapy, and pain management related to invasive medical procedures. As survival rates improved, the focus has shifted to examine the psychosocial impact of paediatric cancer and its treatment for children and their families, both during and after treatment. The success of survivorship highlights an even greater need for psychosocial research and improvement of quality nursing care (Noll et al., 2013). Earlier reviews have been carried out through interviews with qualitative analysis (e.g. Neil and Clarke, 2010) or by questionnaires analyzed with quantitative methods (e.g. Rosenberg et al., 2012) Also studies using a mix-method design have been carried out (e.g. Long and Marsland, 2011). Mattsson et al. (2008) review on the positive consequences of childhood cancer showed that different designs bring out different results when examining the same phenomena. Aim The aim of this systematic literature review was to investigate the content, processes and methodology used in published studies on paediatric oncology and which were related to caring sciences. A further aim was to compare the possible differences in the content and method of the published studies between nursing, psychosocial and medical perspectives. Methods

nursing and psychosocial sciences (as defined in the background section), were identified through a search in the databases CINAHL, PsycINFO, and PubMed. Box. 1 presents the keywords used in the search. Studies meeting the following inclusion-criteria were included: samples of persons diagnosed with cancer during childhood, on or off treatment, a caring sciences perspective (the definition presented in the background being used), in Sweden and articles written in English and published in a peer-reviewed journal between January 2000eJune 2013. As a result of this, 325 studies were identified through this search. Of this 325, 140 were picked out by reading through the titles and abstracts. To identify further studies a basic search was carried out based on the author's names using the same databases, as well as on the internet. First or last authors with >2 publications were included which yielded another 37 studies. Each of these 177 studies were read and reviewed at full-text level. During the review-process, 40 were subsequently excluded as they did not meet the inclusion-criteria. Reasons for exclusion included; not a paediatric patient (16 studies), did not include Swedish patients and/ or their families (eight studies), review article (six studies), was not childhood cancer (five studies), was not researched from a caring science perspective (three studies) and description of instrument development (two studies). All of the remaining 137 studies are included in the analysis section and the final report. Data analysis A mapping protocol was developed, in part, using the MacMaster critical review form for qualitative and quantitative studies (Letts et al., 2007). The protocol examination of the full text level included description of: a) the target person of the research, b) the aim of the research, c) scientific tradition and theoretical aspects, d) data collection, e) study design, f) results, g) clinical implication(s), h) ethics, i) research funds, as well as, j) information about the publication such as journal and year. A summary of the results, conclusions and suggestions for clinical implications also was included in the analysis. As a result of this seven of the articles were reviewed by two of the authors and an interrater reliability was found to be 95%. The remaining articles were divided between and reviewed by each of the six authors. The first author collected and scrutinized all protocols and related articles, before entering them into the data file and revising any misunderstanding of the protocol. SPSS Statistics 19® was used to analyse the quantitative data from the mapping protocol. Non-parametric statistics were used as the data were nominal and ordinal and not considered to be normally distributed. Chi2 was used to compare the scientific perspectives (nursing versus. psychosocial versus medical perspectives). The statistical significance was established at p < .05. During the process of reviewing the articles, full text extract on; a), the results of the study and b), the clinical implications was collected and analysed. The result of those analysis will be reported elsewhere.

Study design Results This study presents a systematic review of the literature using database keyword searches. The selection of studies was performed in two steps. The first step was to identify articles by reading through titles and abstracts using an abstract protocol. The second step involved reviewing the entire article on a full text level using a mapping protocol. Literature search In the first step, studies with empirical data from Swedish participants, and which were relevant to caring sciences and including

The main results of the 137 reviewed studies are presented. Research area Half (n ¼ 69/50%) of the studies in this review (n ¼ 137) involved a psychosocial perspective, with 55 (40%) a nursing perspective, and 13 (9%) more of a medical perspective, but still considered from a caring perspectives. The classification is based on the definition presented in the background and not on the profession of the authors.



3

Box. 1 Keywords used in the search.

The studies (n ¼ 137) have been published in 39 different journals. The journals represented are a variety of paediatric oncology specific journals as well as general journals in the specialty areas of nursing, psychology and medicine. The publication frequency was between 1 and 14 times in the same journal, with the most frequent publications found in the; Journal of Pediatric Oncology Nursing (n ¼ 14), the European Journal of Oncology Nursing (n ¼ 10), Psycho-oncology (n ¼ 8), Pediatric Blood and Cancer (n ¼ 7), Acta Oncologica (n ¼ 7), and Support Cancer Care (n ¼ 5). The studies had been published between the years 2000 and 2013 with a yearly publication rate of 4e17 publications/year. The peak of the publications occurred between 2006 and 2011, with 17 publications in 2007 and 2010. A majority (51%) of the studies did not include any theoretical perspective, with 25% of the studies referring to a more general theoretical perspective related to psychology, such as grief or attachment, 20% to general nursing theory, as patient-centred care, and 4% to sociological theory. Grand theories in nursing were found in the articles classified as nursing, and the general psychological and sociological theories were found in the articles classified as psychosocial (p < .001). No theoretical perspectives were found in any of the 13 articles classified as medical. More specific middlerange theories were described, discussed and referred to in 31% of the studies. The most frequently used middle-range theories were Coping (9%), Family theory (6%), and Quality of Life (5%). The use of a middle-range theory was not related to a specific scientific perspective (nursing versus psychosocial). Aim of the studies The aim, in 130 (95%) of the studies, was to investigate the wellbeing of the participants, mainly in parents (n ¼ 55), in children (n ¼ 39), in survivors (n ¼ 14), in staff (n ¼ 8), and in siblings (n ¼ 6). About one-fourth of the studies concerned experiences of general wellbeing in the participants and one-fourth specific problems, such as depression or post-traumatic stress. Other aims were related to quality of life, anxiety and worries, or a combination of different aspects of wellbeing (Table 1). The aim in just four studies, was to investigate any positive functioning in the participants, two of these were related to staff. Experiences were most often studied using qualitative interviews in nursing studies, compared to those

study which examined problems and quality of life, which were studied using quantitative methods (p < .000) in psychosocial studies (p < .000). In 39 (28%) of the studies, the aim was to investigate hospital care, most often (n ¼ 13) exploring general aspects of care, such as care preferences or good care for children or parents. Other aspects of the care that were studied were palliative care, information strategies and cultural aspects of care. In 27 studies (20%) the aim was to investigate one (or more) specific aspects related to the child, such as pain (n ¼ 8) or nutrition (n ¼ 3). Aspects of care aspects and other specific areas were more often the aim of the nursing studies than related to psychosocial aspects of care (p < .000). A further 20 studies (15%) investigated the child and families' social life such as; social support, friends, parents and siblings social situation which was mainly from parent's perspectives. No differences in the focus on social life were seen between the nursing and psychosocial studies. The target person of the aim in the studies Parents were the most frequent subject in the research (n ¼ 59/ 43%), (Table 2). The child themselves were the primary focus for 39 (28%) studies, another 17 (12%) studies concerned with adult survivors of childhood cancer, the care (n ¼ 9/7%), the staff (n ¼ 7/5%), or the siblings (n ¼ 6/4%). The psychosocial studies were aimed at parents and survivors more often than the nursing studies, which aimed at children, staff and care (p < .000). In a vast majority (n ¼ 94/69%) of the studies in this review the study did not focus on a specific age-group of children, and used the 0e18 year age span, as most of them had the parent, siblings, staff as the target person. Of the studies concerning the child (n ¼ 39), a more narrow age-span was more often used (p < .001). Of all the studies, fourteen of the studies (10%) concerned teenagers, nine studies (7%) involved children 7e12 years of age, and three studies (2%) related to pre-school aged children. The studies examining children in the two youngest age-groups (0e6 and 7e12 years old), were more often studies with a nursing perspective than in the other two perspectives (p < .001), see Table 2. In a majority of the studies (n ¼ 101/74%) a distinction between different diagnoses or diagnose phases were not made. However, in



4

Table 1 The research aim related to target person of the study. Aim of the research

N

%

Children (n ¼ 39)

Survivors (n ¼ 17)

Parents (n ¼ 59)

Siblings (n ¼ 6)

Staff/Care (n ¼ 16)

Wellbeing Experiences Problems Quality of Life (QoL) Several aspect of wellbeing Anxiety and worries Positive functioning Caring aspects General good care Palliative care Information/communication Cultural aspects Clowns in hospital Organization of care Unspecified caring aspects Specific areas Pain/pain management Nutrition Sexuality Physical appearance Cognitive functioning Unspecified Social life Social support Friends Parents social situation Siblings situation Family social situation School situation Unspecified social life

121 39 33 16 15 14 4 39 13 8 5 4 3 2 4 27 9 3 1 1 1 13 20 4 3 3 2 1 1 6

88 28 24 12 11 10 3 28 16 5 4 3 2 1 4 20 7 2 1 1 1 10 15 3 2 2 1 1 1 4

39 9 7 8 7 8

14 2 5 6

55 20 18 2 8 6 1 20 4 6 5 1

5 3 2

8 5 1

10 7 2

1 2 1

1 1

3 2 1

1 1 10 3 2

5

2 6

4 8 1 1

4 4

1 1 1 4 3

3 2

6 13 4 3 3

2

2 1 1 2

2

2

A few studies included more than one aim, therefore >100% together.

some studies, a distinction between the different diagnoses, such as transplantation (14 studies), palliative state (10 studies) and CNStumors (10 studies), had been made (Table 2). Psychosocial and medical studies were found to distinguish between the different diagnoses more often than nursing studies did (p < .05) (Table 2). Research design A majority of the studies were found to have a quantitative design (n ¼ 104/76%) with two-thirds of these related to psychosocial and one-third to nursing perspectives (p < .001). Longitudinal studies (n ¼ 29), comparisons with health controls (or other diseases) (n ¼ 24), comparisons within the group (n ¼ 23) or crosssectional studies (n ¼ 22) were represented. Only six studies included some kind of intervention, where four of those (1.5%) included a control group (as RTC). Most of the studies were analysed using a variety of statistical methods, primarily regression analysis, t-test/ANOVA or non-parametrical statistics. Of the studies examined 35% had a qualitative design based on content analysis (n ¼ 31), Phenomenology (n ¼ 9), Grounded Theory (n ¼ 6) and one each of Ethnology and Discourse analysis. Most of the qualitative studies used an inductive analysis (69%). A few studies had a Mixed-method approach (n ¼ 8) or a re-analysis of published results (n ¼ 2). Data collection The quantitative studies in this review, had quite large groups of participants, most commonly between 101 and 500 participants. About 20% of the studies had less than 20 participants, and more than 40% of the studies had >100 participants (Table 3). Studies with a nursing perspective were found to have, more often, smaller groups (median 10e50 participants) than the studies with a psychosocial perspective, with a median of >100 participants, (p < .000) (Table 2).

The most common participants in the data collection (40%) were parents, followed by more than one group of participants (e.g. parents and staff), then adults survivors, and children (Table 2). In studies with the child as the target person, (n ¼ 39), data was received from the child themselves in 18 studies, from multiple sources in 14, from their parents in six studies, and from staff in one study. Of these 18 studies with children as participants, 14 involved teenagers, and four studies children in the youngest age groups, 0e6 years of age (n ¼ 1) and 7e12 years of age (n ¼ 3), out of the twelve studies with children as the target person. Parents were found to be the most common participants (49%) in the psychosocial studies, while different or multiple sources (34%) were the most common participants in the nursing studies (p < .000). The most frequent data collection method used were studies based on questionnaires (54%), followed by interviews (38%), and with most interviews occurring face-to-face (Table 2). Very few studies were based on observational data (2%) or on registers or data from patient charts (4%). The psychosocial studies were more frequently based on questionnaire data (68), whilst studies in the nursing studies were more often based on interview data (51%), (p < .000). All (n ¼ 3) observational studies were found to have occurred from nursing studies. Questionnaires were used in 74 of 137 studies. Of these, 29 studies used an individual questionnaires developed for the study. One or more standardized measurement instruments were used in the nursing studies. In total, 60 different instruments were found to have been used. The majority of instruments (n ¼ 31) were used in just one single study, or in two studies (n ¼ 17) or three studies (n ¼ 7). The instruments used in two or three studies were often published by the same researcher/research group. Only five different instruments had been used in >3 published articles. Table 3 includes the measurement instruments used in >2 of the studies with parents. Only a few self-reported questionnaires were found to have been used for children (and survivors), as presented in Table 4.


€r et al. / European Journal of Oncology Nursing xxx (2014) 1e8 K. Enska Table 2 Comparing research perspective as well as the participants of the study. n Primary target person Child 0e18 years Survivor Parents Siblings Staff The care Age of the child No specific age (0e18 years old) Survivors Teenager (13e18 years old) School age (7e12 years old) Pre-school (0e6 years old) Diagnosis/state Mixed diagnoses/states Transplantation Palliative phase CNS-tumours Haematological diseases, inc Leukaemia Other Specific diagnosis Number of participants/study 500 Participating in data-collection Child (0e18) Survivors Parents Siblings Nurses Physicians Register data More than one group of participants Others Type of data collection Questionnaire Interview (face-to-face) Interview (telephone) Interview using questionnaire Focus groups interview Observation Register data Another sources

%

Nursing (n ¼ 55)

Psychosocial (n ¼ 69)

39 17 59 6 7 9

28 18 12 1 43 20 4 4 5 7 7 5

16 16 35 2

94

69 38

43

17 14 9 3

12 10 7 2

1 6 8 2

16 8 1 1

101 74 50 14 10 10 7 3 10 7 2 1 1

44 11 5 7 1

1

1

Medical (n ¼ 13) 5 4

4 13

7 3 2 1

14 17 25 21 44 16

10 7 12 14 18 13 15 7 32 12 12 2

5 2 7 13 28 14

2 1 5 1 4

19 15 55 5 6 3 5 30

14 8 11 3 40 15 4 3 4 6 2 3 4 22 19

10 12 34 2

1

3 73 33 9 3 7 3 6 4

2 54 17 24 26 7 2 2 5 6 2 3 4 3 2

mentioned in just two studies (1.5%). Slight variations were seen between the scientific traditions with the nursing studies more frequently suggesting changes in routines on the ward, information and support to staff, and knowledge and reflection among the staff. The psychosocial studies suggested information and support to parents and children (p < .05), more frequently. A more detailed presentation of the clinical implications will be published elsewhere. Ethical aspects The majority of studies included ethical aspects (n ¼ 122/93%). Reference to ethical approval is referred to in 93 studies (68%), referring to ethical approval from an ethical committee, in another 26 (19%) studies, the ethical aspects were also discussed, and in three (2%) studies the ethical aspects were discussed, but without reference to ethical approval. Nursing studies included an ethical discussion in the article more often than the psychosocial and medical studies (p < .000). Funding

1

4 6

5

6

1 5

3 47 5 7 3 1

9 2

5 1

1 1

Numbers in bold text represents the main results.

Results and clinical implications This review found that, 125 articles (91%) were assessed to have a clear and distinctive presentation of the results. In 9% of the articles results and clinical implications were not as clear and could be misunderstood or wrongly interpreted. These articles were equally distributed among the scientific traditions (nursing, psychosocial and medical). No clinical implications were presented in 39 articles (28%). In 31 articles (23%) one or more concrete implication for practice was stated and discussed. Thus, the majority of studies (n ¼ 67/49%) included only diffuse recommendations for clinical practice. No differences were seen between the scientific perspectives (caring, psychosocial and medicine). The most frequent suggestions for clinical practice involved; changes to routines on the ward (n ¼ 24/ 17%), information and support to parents (n ¼ 21/15%), information and support to staff (n ¼ 14/10%), or knowledge and reflection among staff (n ¼ 10/7%). Information and support to children were

A total of 31 different sources for research funding was acknowledged by the authors (N ¼ 137). The most frequently mentioned source of funding was from the Swedish Childhood Foundation (n ¼ 102/75%). Other sources included; the Swedish Cancer foundation (16%), the Cancer and Traffic Victims Fund (15%), the Swedish Research Council (12%), the local County Councils (17%) or local Universities funds (15%). Discussion This systematic review of the literature has demonstrated that the wellbeing of parents (43%) of children with cancer is a prevalent focus in Swedish published research on paediatric oncology from a caring science perspective. The second most studied aspect was found to be wellbeing in children (28%) and caring aspects (as good care for parents and specific interventions to children) followed by social life, especially for parents. This is only partly in line with the research priorities stated by Hinds et al. (1994); to measure the quality of life and late effects of treatment in long-term survivors of childhood cancer. As it is focusing on the wellbeing (QoL) of both parents and children, but has less focus on long-term survivors. This review includes published studies from between 2000 and 2013 reflecting research priorities from the 1990's as; the process from idea to published article often takes several years, sometimes 20 years from initial concept/idea, to published article. Therefore, it may take another 10e20 years for the next shift in research direction. Studying parent's wellbeing which is related to the child's cancer disease, has been widely studied internationally. However, published studies do not agree on the significance of the negative impact on parents. For example, Wakefield et al. (2011) stated that parents can experience significant distress, including fear of recurrence, fatigue, and loneliness. Whilst others, claimed after reviewing the literature, that parents/family member(s), adjust well to the cancer of a loved one, and that only a minority appear to be at risk for psychological morbidity (eg. Hagedoorn et al., 2011; Long and Marsland, 2011). It has also been found that distress appears to ease with time (Wakefield et al., 2011). The studies in this review dealt mainly on the negative effects of psychological wellbeing, despite the fact that research has proven that positive aspects of wellbeing, such as, self-esteem and mastery, are important predictors for parents' wellbeing and their view of the child's prognosis (Fayed et al., 2011). Research has also shown the benefits



6 Table 3 Most commonly used questionnaires for parents. Questionnaires

Parents

Study specific State-Trait Anxiety Inventory Hospital Anxiety and Depression Scale e HADS Parental Psychosocial Distress Cancer e PPD-C Zung Self-Rated Depression Scale Centre for Epidemiological Studies Depression Scale CES-D Memorial Symptom Assessment Scale MSAS Post-Traumatic Stress Disease Civilian Version PCLC Post-Traumatic Stress Symptom PTSS Shiom-Melander Burnout Questionnaire SMBQ The Goteborg Quality of Life inventory General Health Questionnaire Impact of Event Scale Revised IRS-R Comprehensive Satisfaction with Care Short Form CASC-SF Sense of coherence Utrecht coping list Perceived support scale

21 8 4 4 3 2 2 2 2 2 2 2 2 2 2 2 2

of education (Aburn and Gott, 2011) and the benefits of psychosocial interventions (Peek and Melnyk, 2010) for parents. The body of research-based knowledge in paediatric caring sciences has been increasing dramatically since the 1990s, and several authors conclude that the next step needs to be to identify risk-groups, define outcomes, and design interventions (Peek and Melnyk, 2010; Rosenberg et al., 2012). It was somewhat disappointing to find that almost all of the studies in this review were of a descriptive or comparative design, with only 29% having a longitudinal design, and with some kind of intervention included in only six studies. One of the reasons for this could be that in a new research area you first need to describe and create hypotheses before you can start to carry out interventions in the area. Another possible explanation could be that the population of children with cancer is small which makes conducting an RTC and other interventions methodologically difficult to set up and carry out. Thus, research on the caring sciences in Swedish paediatric oncology Table 4 Most commonly used questionnaires for children and survivors. Questionnaires

Unspecified age

7e12 y

13e18 y

Survivors

Study specific Child Health Questionnaire e SCHQ-CF87 VAS CAS/FAS Subjective health and symptom inventory Landsky and Karnofsky Scale Children's Depression Inventory e CDI I think I am DISABKIDS Neuropsychiatric evaluation Life Situation scale: Children e LSS-C SF-36 Life Situation scale: Adolescents e LSS-A Hospital Anxiety and Depression Scale e HADS Schedule for Evaluation of the Individual Quality of Life e SEIQoL-DW Sense of Coherence The Goteborg Quality of Life Inventory HCNs Medical Care e HUI Sex in Sweden

2 3

1

7

3

2 1 1 1 1 2 1

1 2 2 1 3 1 3

3 5

1

3 2 1 1

needs to shift from exploring by using cross-sectional studies to using longitudinal designs (qualitative or quantitative) in order to predict the natural courses of the disease. In the future research, it will be of great importance to include and test different interventions to improve the wellbeing and quality of care of children and parents. Perhaps this shift has already begun, but has not been published, as yet. It was also surprising to find that 28% of the published articles aimed to investigate the child's perspective of their health, everyday life, activities or caring aspects and only 13% having a child's perspective (as the child being participant in the study). A visible trend in the review was that younger children were less involved in rating their situation or being interviewed. This could be due to the fact that investigating children's experiences and perceptions are challenging for the researcher, particularly in an area with children who are severely affected both physical and mentally. Specific research methods for investigating children's experiences have been developed (e.g. Coyne et al., 2006; Darcy et al., 2014; Nilsson et al., 2013). In future, caring science research within paediatric oncology demands the researcher to include children (even of young age) in research to show awareness to the United Nations convention; The human right of children (Beazley € derb€ et al., 2009) as well as having a child's perspective (So ack et al., 2011). Questionnaire data on wellbeing was frequently used in this review. It was surprising to find that so many different instruments had been translated in to Swedish and used to measure similar aspects of wellbeing or Quality of Life (QoL), both for measuring children, survivors as well as parent's perceptions. Klassen et al. (2010) reviewed QoL questionnaires for children with cancer and childhood cancer survivors, and found 13 different questionnaires were being used internationally. None of these internationally recommended 13 questionnaires (Klassen et al., 2010) had been used in any of the Swedish research. This could be due to the fact that these questionnaires are not validated for use in the Swedish language and culture. However, this could be seen as a hindrance to research for international collaboration and comparisons. Another reason for not choosing the recommended QoL instruments could be that the Swedish researchers did not aim to measure the concept of “Quality of Life”, but heading for other dimensions related to wellbeing. However, the studies measure the same domains (physical, psychological, social and general health) as includes in those QoL instruments (Anthony et al., 2014). Petersson et al. (2013) assessed instruments for measuring health-related QoL, which have been translated and validated for Swedish use, and found that the instruments with a smaller number of items were focused only on a few domains, while measurement tools with a greater depth of content cover a greater number of domains. This indicates that different type of instruments would be appropriate depending on their intended use. Differences between the nursing and the psychosocial studies became apparent in this literature-review. In the nursing respective psychosocial studies, some of the authors have related their arguments to a more general theoretic perspective, as grief, attachment or patient-centred care. However, some authors used a more specific theoretical perspective (a middle-range theory), in their studies. In these cases, the same middle-range theories (as Coping, Family theory and Quality of Life) were used independent of perspective (nursing and psychosocial). In paediatric oncology nursing, as in other areas of nursing, a shift from discipline grand theories (e.g. Wright et al., 1994) to interdisciplinary middle-range theories (e.g. Lin et al., 2010; Zander et al., 2010) has occurred. This shift has been described as necessary for the advancement of the discipline (Fawcett, 2005, Lenz et al., 1995). The Swedish Research Council (2010), in their evaluation, wanted to see more evidence



of theorizing in caring sciences including use of theories, theory development and testing. Other differences between the scientific perspectives were that more experiences were investigated utilising qualitative methods and based on interviews, in the nursing studies. The psychosocial articles were prominently qualitative studies, and primarily used questionnaires. It is difficult to draw general conclusions on these few studies. However, there is a tendency for nursing research to focus on the child during treatment and on different ages, rather than the life situation over time. In regards to the psychosocial studies, the reverse was found to be true, as the tendency is to study different disease phases (as survivors) and to focus on a specific diagnosis groups such as CNS-tumours, transplantation or palliative care. These perspective differences may mirror the different starting point of research necessary in developing patient care (nursing perspective) and investigating psychological reaction to illness in humans (psychosocial). In this systematic literature review, the differences between the scientific traditions was mainly in the research design (methodological) rather than on the aim/focus of the research. Future research, according to the Children's Oncology Group's nursing research needs to develop and understand effective delivery of education to the patient/family, and how to reduce illness-related distress in children, adolescents, and young adults with cancer and their family caregivers (Landier et al., 2013). A multi-professional/multidisciplinary approach including both nursing and the psychosocial perspectives are required and need to be integrated, in order to achieve this. This requires improved interdisciplinary collaboration (Noll et al., 2013). To support these developments, research with the two perspectives (nursing and psychosocial) needs to focus more on the specific aims linking clinically relevant aims with interventions, rather than using the same ideal outcome (wellbeing). This also requires that the outcome of wellbeing is operationalized in more detail. The Swedish Research Council (2010) additionally found, in their evaluation, that research plans were often simply statements about doing more of the same or enhancing the same research topics. They call for more strategic plans on research collaborations and links to wider institutional strategies. Above all, the establishment of interdisciplinary projects with the explicit aim of discovering innovative solutions to “old problems”, are of utmost importance for the caring sciences in Sweden. In this systematic literature review, the results of the different studies were considered to be presented both clearly and distinctively. However, the clinical implications of the studies were considered more diffuse. This could make the results of research difficult to implement. Translating research into evidence-based nursing practice and evaluating the effectiveness of its implication in terms of patient outcomes and safety, are necessary for advancing excellence in quality health (Coopey et al., 2006). Investigators aiming to establish a link between using research and improved patient outcomes must first identify those interventions that are effective at increasing research use (Thompson et al., 2007). Clinical staff in paediatric oncology would be assisted in the implementation of research into practice by clear suggestions from researchers. The transferability of research results needs to be investigated further. In a majority (75%) of the studies, the authors acknowledged the Childhood Cancer Foundation for research funding. The actual number could even be higher, as all sources of funding might not have been stated in the publication. It could be seen as obvious that research in paediatric oncology is financed by an association/ foundation with the same focus. However, at the same time, it is surprising to find that this type of research has not been funded by

7

other more independent research funds, to a greater extent. For example only 12% of the studies had been funded by the Swedish Research Council. It also means that Swedish paediatric oncology research is in the hands of the research-board of the Childhood Cancer Foundation in order to decide what needs to be funded/ researched. Limitation of the study This systematic literature review was found to have some limitations. Firstly, the inclusion criteria were only for Swedish studies (published in English) and published between January 2000 and March 2013 in certain databases. Of course this limitation to Swedish studies aims at a more national perspective in paediatric oncology caring sciences rather than giving the full picture of international research. Despite the wide range of keywords in combination with the manual searches, it is possible that some potential studies have been missed. The second limitation is the use of the concept caring sciences. Although the inclusion criteria was based on a solid definition of caring science (Department of Public Health and Caring Sciences (IFV), Uppsala University, 2013), still the included and excluded was make by a group of researchers and could be seen as partly subjective. Article inclusion was thus very inclusive, resulting in a small number of articles not being classified as neither nursing nor psychosocial sciences, and therefore labelled as “medical”. Those articles were too few to analyse separately and to draw conclusions from. The third limitation of this study was not carrying out a quality review of the included articles prior to the analysis process. This was deemed unnecessary due to the aim of this review, and the fact that all of the studies had undergone a review process prior to bring published in a peer-reviewed journal. Another limitation was that all six authors were involved in the review process. As an interrater reliability test showed high reliability between the reviewers, this could be seen as a minor problem. Conclusion and recommendations This systematic literature review has demonstrated that the most prevalent areas of focus of Swedish published research on paediatric oncology from a caring science perspective involved the wellbeing of parents, followed by the wellbeing of children, caring aspects, and social life. In conclusion, the topic of parents' wellbeing has been researched from many angles, using different methods. It appears that the evidence now is so robust that further descriptive studies in this area cannot be priorities, rather to develop interventions to address those needs in parents been described in earlier research. Future researchers need to take on the challenge of including children (even those of a young age) in research, in order to have the child's perspective in paediatric oncology. A network of researchers and clinicians collaborating nationally and internationally need to agree to use a few instruments for measuring health or QoL. This will increase the possibility of carrying out national and international comparisons as well as time comparisons, especially pre- and post-interventions. However, the biggest challenge for the future, is to shift from explorative studies to intervention studies. There is also an urgent need to transform research results into clinical practice. The responsibility for these shifts is shared by clinical staff, researchers and not least by the research-boards, who influence the future research by their decisions. Conflict of interest No conflicts of interest are declared by the authors.



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Acknowledgement The authors would like to thank: The Swedish Foundation for International Cooperation in Research and Higher Education, STINT's Teaching Sabbatical programme; Alice Lee Centre for Nursing Studies, National University of Singapore (NUS); and the Swedish Childhood Cancer Foundation for funds, time and support which made this review possible. Appendix A. Supplementary data Supplementary data related to this article can be found at http:// dx.doi.org/10.1016/j.ejon.2014.10.013. References Aburn, G., Gott, M., 2011. Education given to parents of children newly diagnosed with acute lymphoblastic leukemia: a narrative review. Journal of Pediatric Oncology Nursing 28 (5), 300e305. Anthony, S.J., Selkirk, E., Sung, L., Klaassen, R.J., Dix, D., Scheinemann, K., et al., 2014. Considering quality of life for children with cancer: a systematic review of patient-reported outcome measures and the development of a conceptual model. Quality of Life Research 23 (3), 771e789. Beazley, H., Alderso, P., Morrow, V., Jame, A., 2009. The right to be properly researched: research with children in a messy, real world. Children's Geographies 7 (4), 365e378. Coopey, M., Nix, M., Clancy, C., 2006. Translating research into evidence-based nursing practice and evaluating effectiveness. Journal of Nursing Care Quality 21 (3), 195e202. Coyne, I., Hayes, E., Gallagher, P., Regan, G., 2006. Giving Children a Voice, Investigation of Children's Experience of Participation in Consultation and Decisionmaking in Irish Hospitals. Office of Minister for Children. Retrieved 2014-0909. http://www.dcya.gov.ie/documents/research/Giving_Children_a_Voice.pdf. Darcy, L., Knutsson, S., Huus, K., Enskar, K., 2014 Nov-Dec. The everyday life of the young child shortly after receiving a cancer diagnosis, from both children's and parent's perspectives. Cancer Nurs. 37 (6), 445e456. http://dx.doi.org/10.1097/ NCC.0000000000000114. Department of Public Health and Caring Sciences (IFV), Uppsala University, 2013. Caring Sciences. Retrieved 2013-09-26. http://www.pubcare.uu.se/ViewPage! renderDecoratedPage.action?siteNodeId¼22057&languageId¼1. Fawcett, J., 2005. Middle Range Nursing Theories Are Necessary for the Advancement of the Discipline. Retrieved 2013-09-26. http://aquichan.unisabana.edu. co/index.php/aquichan/article/view/57/119. Fayed, N., Klassen, A.F., Dix, D., Klaassen, R., Sung, L., 2011. Exploring predictors of optimism among parents of children with cancer. Psychooncology 20 (4), 411e418. Government Bill, 2008/09:50 (Regeringens proposition 2008/09:50). A boost for €r forskning och innovation). research and innovation (In Swedish) (Ett lyft fo Retrieved 2013-09-26. http://www.regeringen.se/content/1/c6/11/39/57/ 2f713bd9.pdf Gustafsson, G., Heyman, M., Vernby, Å., 2007. Childhood cancer Incidence and Survival in Sweden 1984-2005. Barncancer Epidemiologiska Forsknings Enheten vid Karolinska Institutet, Stockholm, Sweden. Hagedoorn, M., Kreicbergs, U., Appel, C., 2011. Coping with cancer: the perspective of patients' relatives. Acta Oncologica 50 (2), 205e211. Hinds, P., Quargnenti, A., Olson, M., Gross, J., Puckett, P., Randall, E., et al., 1994. The 1992 APON Delpi study to establish research priorities for pediatric oncology nursing. Association of Pediatric Oncology Nurses. Journal of Pediatric Oncology Nursing 11 (1), 20e27. Klassen, A.F., Strohm, S.J., Maurice-Stam, H., Grootenhuis, M.A., 2010. Quality of life questionnaires for children with cancer and childhood cancer survivors: a

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