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Table 1 Characteristics of the included studies

From: An integrative review on the information and communication needs of parents of children with cancer regarding the use of complementary and alternative medicine

Study IDSubject/PopulationMethodDesignSettingAim (s)Participant(s)Sample sizeInclusion/exclusion criteriaResultsFunding
Agapito J, 2000 [42]Ethical issues of declining conventional cancer treatmentText and opinion paper, based on a caseNAHospitalNA13 years boy with osteosarcoma with lung metastasisn = 1NAThe obligation of conventional health care providers to treat people holistically, and the need for them to delve more deeply into the philosophical underpinnings of parents viewpointsNR
AL-Qudimat, MR, 2011 [28]Use of CAM among children with cancer in JordanQuestionnaire and interviews with parentsDescriptive cross-sectional designA paediatric oncology department in JordanTo examine the use of CAM among children with cancer, including prevalence, CAM modalities used, reason for use and parent-perceived benefit of CAMParents of children with cancern = 840–18 years of age; diagnosed with cancer at least 2 months prior to the study with parents that agreed to participate in the studyNearly half of the participants (45,5%) that used CAM perceived benefits from CAM. Parents use CAM to support their child’s medical treatment and to use all possible methods to cure their child. Most have not discussed this use with the medical staffNo funding
The American Academy of Paediatrics, 2001 [43]Children with chronic illness and disabilities including cancerRecommendations for clinicians/paediatriciansGuidelinesUSATo provide information and guidance for paediatricians when consulting families about CAMNANANAIt is important to maintain a scientific perspective to provide balanced advice about therapeutic options, to guard against bias, and to establish and maintain a trusting relationship with familiesNR
Ball SD, 2005a [29]The nature and prevalence of dietary supplement use among chronically ill childrenSelf-reported questionnaireSurveySub speciality medical clinics in South Lake City, UtahInvestigate the nature and prevalence of dietary supplement use as an adjunct to conventional medical treatment in chronically ill childrenParents of chronically ill childrenn = 505, of which n = 100 with cancerParents with chronically ill children that were accompanying their child on the clinical visit in the period February to august, 2001.Dietary supplements use is prevalent among chronically ill children especially among those with poor diagnosis or for whom are limited conventional medical treatment. The physicians were not informed about their patients use of dietary supplementsNR
Ben Arush, 2006 [30]Prevalence, types and characteristics of CAM useFace to face questionnaireCross-sectional studyPaediatric haematology oncology department at Meyer Children’s hospital in Rambam medical centre, IsraelTo evaluate the prevalence, types and characteristics of CAM use by ethnic demographic socio-economic and disease factors as well as involvement of the treating physiciansParents of children with cancer, or adolescents with cancern = 74 parents and n = 26 adolescentsAll patients/parents who visited the clinic during the last half of 2003. Patients with benign teratoma and cranio-pharyngioma were excludedMost participants were interested in receiving information on CAM and the availability of CAM in the hospital. Most used CAM without informing their physician.NR
Bold J, 2001a [47]Children with cancerSemi-structured telephone interviewsQualitative studyRegion of Saskatchewan, CanadaTo estimate the preference of unconventional therapy use, including identification of the commonly used therapies and to describe expectations and experiences of families seeking unconventional therapiesParents of all children with cancern = 44Parents of all children who were aged 14 years or younger when diagnosed with cancer during 1994 and 1995 in Saskatchewan and still living at the time of the study36% of the participants reported using CAM, 21% considered it. Parents identified a need for better quality information about CAMNational Cancer Institute of Canada; The Canadian Cancer Society; L. Schulman Trust Fund
Clayton MF, 2006 [44]Brain tumour in a 10 year old boyText and opinion paper based on a caseNANADescribe the importance of good patient-care provider communication, based on nursing a 10 year old boy who died at home (palliative phase)NANANACommunication by using every opportunity to learn and lessen following up on concerns, and delivering information in a way that preserves their (parents) hope and respect their decisionsNR
Fernandez C, 1998 [31]Paediatric patients diagnosed with cancerQuestionnaireRetrospective cohort studyTertiary care paediatric oncology Centre in British ColumbiaTo examine the use of CAM therapies in paediatric oncology patientsParents of children with cancern = 366Parents of children in whom a diagnosis of cancer was made between June 30, 1989 and July 1, 1995. Patients who died within 1 week of diagnosis, patients with Langerhans’ cell histiocytosis, bening teratomas and craniopharyngioma were excluded42% used CAM. Herbal teas, plant extracts and vitamins was the most used. Factors that influenced CAM use were prior use, positive attitude towards CAM, information from families and friends or from CAM practitionersNR
Fletcher PC, 2004 [48]Children diagnosed with cancerPhone interviewsQualitative studyOntario, CanadaTo interview parents about the experience they faced when coping with a child who has been diagnosed with cancer, with focus on the use of CAM therapiesParents of children with cancern = 29Parents whose children have been diagnosed with cancer within the previous 5-year period. Parents who lost their child, or of which the child was in the palliative stage were excludedThree themes 1: Parent’s opposition to CAM utilisation. 2. Parents support of CAM use with their children with cancer 3. Physicians views of CAM as perceived by parentsNR
Gagnon EM, 2003 [32]Paediatric oncology patientsQuestionnaireCross-sectional surveyPaediatric oncology clinic in USATo investigate how parents preferred level of control in treatment decision making is related to their personal health care involvement and their decision to use CAM for their childParents or caretakers of paediatric patientsn = 118English speaking parents of paediatric patients, accompanying a child for an appointment, the child had been diagnosed at least 1 month prior, and was either receiving treatment or had completed treatment less than 2 years prior. Parents accompanying children for consultations or emerging medical visits were excludedMost parents preferred active or collaborative decision-making. Preference for control in decision making was not associated with CAM useThe Agency for Healthcare Research and Quality, The Leonard P. Zakin Center for Integrated Therapies at the Dana-Farber Cancer Institute
Gilmour J, 2011 [45]Adverse effects of chemotherapy in a 6 years old boy diagnosed with medulloblastomaExpert opinion based on a case studyNANATo explain clinicians obligations when obtaining inform consent to treatment and discuss the clinician’s responsibility to tell parents or patients about a potential beneficial CAM therapyA 6 year old boyNANAPhysicians have an ethical duty to beneficence, to do good and not harm. They must be aware of current research on pain and symptom management and other aspects of care. This may include CAM therapies when there is reliable evidence of therapeutic benefitSikKids foundation, Alberta heritage Foundation for Medical Research, The Canadian Institutes of Health research.
Gozum S, 2007 [33]Childhood cancerSemi-structured questionnaire (face to face interviews based on the questionnaire)Cross-sectional studyPaediatric oncology unit in eastern TurkeyTo gain insight into the prevalence and factors related to the use of CAMParents of children with cancern = 88Parents of children with cancer who were treated at the centre and had children between 0 and 18 years of age, at least 2 months post diagnosis and agreed verbally to participate48, 9% used CAM. Most common was herbal products/tea/mealNR
Krogstad T, 2007 [49]Childhood cancerFocus group interviewsQualitative studyHospitalInvestigate the perceptions and experiences about dietary supplements and natural products among parents of children with cancer. From whom they prefer to receive information from and how they perceive advice from family and friendsParents of children with cancern = 21NRParents were very restrictive in giving natural products to their children. However, many parents felt considerable pressure from media, commercial advertising and the health food market to give such products to the child. Recommendations from friends and family were difficult to handle because failure to follow up advice felt like a burden. The parents did not receive information from their physician about these productsNR
Ladas EJ, 2014 [34]Cancer diagnosis in children and adolescentsQuestionnaireCross-sectional studyPaediatric oncology centre in Guatemala CityTo describe the prevalence, pattern of use and descriptive associations of TCAMb use among children diagnosed with cancerParents of children and adolescentsn = 100Parents of children and adolescents who were undergoing treatment for cancer, receiving palliative care, or have completed treatment90% of parents reported use of TCAM. 67% used TCAM for supportive care and 34% for curative purposes. Most use was oral supplementsNR
Laengler A, 2008 [35]Cancer diagnosis under the age of 15QuestionnaireRetrospective surveyAll German hospitals that reported to the German Childhood Cancer RegistryTo compare the group of homeopathy users with users of other CAM therapies with regard to pattern of CAM, and the attending circumstances of previous experiences of CAMParents of children with cancern = 367All parents in Germany with a child under the age of 15 diagnosed in 2001 with cancer that was recorded by the German childhood cancer registry. Exclusion: Death of a child within the first 8 weeks after the diagnosis and development of a second cancer35% of the respondents had used CAM. Sources of information about CAM were in most cases no doctors. 71% of the users had communicated the use of CAM with the doctorThe Deutsche Kinderkrebsstiftung Bonn
Magi T, 2015 [18]Children and adolescents with cancerQuestionnaireRetrospective surveyUniversity Children Hospital Bern, SwitzerlandTo collect information on CAM use by childhood cancer patientsFamilies of children with cancern = 123All patients between 0 and 18 years who were diagnosed between January 1, 2002 and December 31, 2011, and registered in the Swiss childhood cancer Registry (SCCR). Exclusion: Death within 2 months of diagnosis and parents refusal to participate in a survey53% had used CAM, 25% of patients received information about CAM from medical staff. Most frequent reason for not using CAM was lack of informationSwiss pediatric oncology group; Schweizeriche konferenz der kantonalen gesundheitdirektorinnen und-direktoren; Swiss Cancer Research; Kinderkrebshilfe Schweiz; Ernst-Göhner Stiftung; Stiftung Domarena, CSL Behring
Molassiotis A, 2004 [36]Children with cancer between 5 and 18 years of ageQuestionnaireCross-sectional studyA large hospital in the UKTo determine the preference of CAM use among children with cancer and motives of parents for doing soParents of children with cancern = 49Parents of children who have been diagnosed with cancer between November 1999 and November 200132,7% reported CAM use. Most used were multivitamins, aromatherapy and massage. Parents identified a need for more informationNR
Ndao DH, 2013Childhood cancer survivorsInterviewer (in person or phone) based questionnaireSurveyHerbert Irving Child and Adolescent, Oncology centre, Columbia University medical centre, NYTo investigate the prevalence of CAM use, types and reason for use, and the determinants of use among survivors of childhood cancerChildren, adolescents and young adultsn = 197Children, adolescents and young adults visiting the Herbert Irving Oncology Centre, all participants were at least 3 months from completion of treatment for cancer58% reported using CAM, 72% of which used biologically based therapies (supplements, nutrition, vitamins, minerals, herbs). 51% of all CAM therapies were disclosed to the physicianTamarind Foundation
Olbara G, 2018 [38]Health care providers perspectives on TCAM in KenyaQuestionnaireCross-sectional studyMTRH, the largest public tertiary hospital in Western KenyaTo explore health care providers perspectives onTCAM involved in the care of children with cancer, personal experience with TCAM, health beliefs, components of TCAM, recommending or discouraging TCAM, communication between health care providers, parents and TCAM practitioners and knowledge about TCAMHealth care providersN = 155All health care providers identified from the hospital employed registryHealth care providers felt that communication with parents about TCAM should be emphasised and were enthusiastic to improve their knowledge about it.NR
Rajanandh MG, 2018a [39]Paediatric cancerQuestionnaireSurveyTertiary care South Indian HospitalInvestigate the prevalence of CAM use among paediatric cancer patients in a tertiary care hospitalMale and female patients less than 18 year of age, or their parentsn = 277Patients less than 18 year of age clinical diagnosed with any type of cancer for more than three months. Patients with any comorbidities were excluded7, 6% used CAM, most common Aryurveda. None of the parents disclosed the CAM use to the oncologistsNR
Singendonk M, 2013 [40]Paediatric cancerQuestionnaireProspective multicentre studySix academic hospitals in the NetherlandsInvestigate the prevalence of CAM use, possible determinants of use, parental attitude towards communication and research on CAM therapiesParents of children with cancern = 304Parents of children with cancer age 0–21 with a diagnosis of malignancy in the past 5 years, attending the oncology outpatient clinics from June 2011 to January 2012. Parents with insufficient knowledge of the Dutch language were excluded42,4% had used CAM the past 12 months. 19,1% had used more than one type of CAM, 26.5% had used over the counter products. 75% found CAM modalities effectiveNo funding
Susilawati D, 2016 [41]Cancer diagnosis in childrenQuestionnaireCross-sectional studyPaediatric department of a hospital in IndonesiaExplore and compare perspectives (parents and health care professionals) on CAM in children with cancerCaretakers of children with cancern = 176All parents of children with cancer who were hospitalized or visited the clinic from September 2013 to October 201454% think that CAM may be helpful in cancer treatment of children. Most recommended CAM was prayer (93%). Health care providers and parents had different perspective on CAM use in children with cancerNoord-Zuid Programma, The Stichting Medicines for ALL and the doctor 2 Doctor Program
Tautz C, 2005 [46]Children with cancerExpert opinionNAChild and adolescence medicine department of the general hospital Herdecke, GermanyTo provide an overview of the CAM methods most commonly used in the treatment of children with cancerParents and doctorsNANAThe theoretic bases for anthroposophical medicine, homeopathy, phytotherapy, Boswellia preparations, vitamins, enzymes, diary supplements and psycho-oncology are describedNR
Turhan AB, 2016 [10]Childhood cancerQuestionnaireCross-sectional studyOutpatient paediatric oncology clinicTo explore the frequency of CAM use, factors affecting the use, and the individual CAM treatments used, the perception of families regarding the efficacy and safety of CAM and their sources of informationParent of children with cancern = 74Children undergoing chemotherapy or who have completed courses of chemotherapy, between 0 and 18 years, in the last three months post diagnosis, and parents agreed verbally to participate. Children in palliative care, had died, or had second cancers were excluded67.5% used these products, main source of information was internet, used CAM without information healthcare professionals, incorporate it into conventional careNR
  1. NA Not applicableM, NR Not Reported, aExcluded from further analysis due to either poor methodological quality or other bias, bTCAM, Traditional CAM