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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 ID

Subject/Population

Method

Design

Setting

Aim (s)

Participant(s)

Sample size

Inclusion/exclusion criteria

Results

Funding

Agapito J, 2000 [42]

Ethical issues of declining conventional cancer treatment

Text and opinion paper, based on a case

NA

Hospital

NA

13 years boy with osteosarcoma with lung metastasis

n = 1

NA

The 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 viewpoints

NR

AL-Qudimat, MR, 2011 [28]

Use of CAM among children with cancer in Jordan

Questionnaire and interviews with parents

Descriptive cross-sectional design

A paediatric oncology department in Jordan

To examine the use of CAM among children with cancer, including prevalence, CAM modalities used, reason for use and parent-perceived benefit of CAM

Parents of children with cancer

n = 84

0–18 years of age; diagnosed with cancer at least 2 months prior to the study with parents that agreed to participate in the study

Nearly 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 staff

No funding

The American Academy of Paediatrics, 2001 [43]

Children with chronic illness and disabilities including cancer

Recommendations for clinicians/paediatricians

Guidelines

USA

To provide information and guidance for paediatricians when consulting families about CAM

NA

NA

NA

It 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 families

NR

Ball SD, 2005a [29]

The nature and prevalence of dietary supplement use among chronically ill children

Self-reported questionnaire

Survey

Sub speciality medical clinics in South Lake City, Utah

Investigate the nature and prevalence of dietary supplement use as an adjunct to conventional medical treatment in chronically ill children

Parents of chronically ill children

n = 505, of which n = 100 with cancer

Parents 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 supplements

NR

Ben Arush, 2006 [30]

Prevalence, types and characteristics of CAM use

Face to face questionnaire

Cross-sectional study

Paediatric haematology oncology department at Meyer Children’s hospital in Rambam medical centre, Israel

To evaluate the prevalence, types and characteristics of CAM use by ethnic demographic socio-economic and disease factors as well as involvement of the treating physicians

Parents of children with cancer, or adolescents with cancer

n = 74 parents and n = 26 adolescents

All patients/parents who visited the clinic during the last half of 2003. Patients with benign teratoma and cranio-pharyngioma were excluded

Most 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 cancer

Semi-structured telephone interviews

Qualitative study

Region of Saskatchewan, Canada

To estimate the preference of unconventional therapy use, including identification of the commonly used therapies and to describe expectations and experiences of families seeking unconventional therapies

Parents of all children with cancer

n = 44

Parents 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 study

36% of the participants reported using CAM, 21% considered it. Parents identified a need for better quality information about CAM

National Cancer Institute of Canada; The Canadian Cancer Society; L. Schulman Trust Fund

Clayton MF, 2006 [44]

Brain tumour in a 10 year old boy

Text and opinion paper based on a case

NA

NA

Describe the importance of good patient-care provider communication, based on nursing a 10 year old boy who died at home (palliative phase)

NA

NA

NA

Communication 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 decisions

NR

Fernandez C, 1998 [31]

Paediatric patients diagnosed with cancer

Questionnaire

Retrospective cohort study

Tertiary care paediatric oncology Centre in British Columbia

To examine the use of CAM therapies in paediatric oncology patients

Parents of children with cancer

n = 366

Parents 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 excluded

42% 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 practitioners

NR

Fletcher PC, 2004 [48]

Children diagnosed with cancer

Phone interviews

Qualitative study

Ontario, Canada

To 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 therapies

Parents of children with cancer

n = 29

Parents 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 excluded

Three 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 parents

NR

Gagnon EM, 2003 [32]

Paediatric oncology patients

Questionnaire

Cross-sectional survey

Paediatric oncology clinic in USA

To 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 child

Parents or caretakers of paediatric patients

n = 118

English 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 excluded

Most parents preferred active or collaborative decision-making. Preference for control in decision making was not associated with CAM use

The 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 medulloblastoma

Expert opinion based on a case study

NA

NA

To 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 therapy

A 6 year old boy

NA

NA

Physicians 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 benefit

SikKids foundation, Alberta heritage Foundation for Medical Research, The Canadian Institutes of Health research.

Gozum S, 2007 [33]

Childhood cancer

Semi-structured questionnaire (face to face interviews based on the questionnaire)

Cross-sectional study

Paediatric oncology unit in eastern Turkey

To gain insight into the prevalence and factors related to the use of CAM

Parents of children with cancer

n = 88

Parents 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 participate

48, 9% used CAM. Most common was herbal products/tea/meal

NR

Krogstad T, 2007 [49]

Childhood cancer

Focus group interviews

Qualitative study

Hospital

Investigate 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 friends

Parents of children with cancer

n = 21

NR

Parents 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 products

NR

Ladas EJ, 2014 [34]

Cancer diagnosis in children and adolescents

Questionnaire

Cross-sectional study

Paediatric oncology centre in Guatemala City

To describe the prevalence, pattern of use and descriptive associations of TCAMb use among children diagnosed with cancer

Parents of children and adolescents

n = 100

Parents of children and adolescents who were undergoing treatment for cancer, receiving palliative care, or have completed treatment

90% of parents reported use of TCAM. 67% used TCAM for supportive care and 34% for curative purposes. Most use was oral supplements

NR

Laengler A, 2008 [35]

Cancer diagnosis under the age of 15

Questionnaire

Retrospective survey

All German hospitals that reported to the German Childhood Cancer Registry

To 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 CAM

Parents of children with cancer

n = 367

All 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 cancer

35% 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 doctor

The Deutsche Kinderkrebsstiftung Bonn

Magi T, 2015 [18]

Children and adolescents with cancer

Questionnaire

Retrospective survey

University Children Hospital Bern, Switzerland

To collect information on CAM use by childhood cancer patients

Families of children with cancer

n = 123

All 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 survey

53% had used CAM, 25% of patients received information about CAM from medical staff. Most frequent reason for not using CAM was lack of information

Swiss 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 age

Questionnaire

Cross-sectional study

A large hospital in the UK

To determine the preference of CAM use among children with cancer and motives of parents for doing so

Parents of children with cancer

n = 49

Parents of children who have been diagnosed with cancer between November 1999 and November 2001

32,7% reported CAM use. Most used were multivitamins, aromatherapy and massage. Parents identified a need for more information

NR

Ndao DH, 2013

Childhood cancer survivors

Interviewer (in person or phone) based questionnaire

Survey

Herbert Irving Child and Adolescent, Oncology centre, Columbia University medical centre, NY

To investigate the prevalence of CAM use, types and reason for use, and the determinants of use among survivors of childhood cancer

Children, adolescents and young adults

n = 197

Children, adolescents and young adults visiting the Herbert Irving Oncology Centre, all participants were at least 3 months from completion of treatment for cancer

58% reported using CAM, 72% of which used biologically based therapies (supplements, nutrition, vitamins, minerals, herbs). 51% of all CAM therapies were disclosed to the physician

Tamarind Foundation

Olbara G, 2018 [38]

Health care providers perspectives on TCAM in Kenya

Questionnaire

Cross-sectional study

MTRH, the largest public tertiary hospital in Western Kenya

To 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 TCAM

Health care providers

N = 155

All health care providers identified from the hospital employed registry

Health 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 cancer

Questionnaire

Survey

Tertiary care South Indian Hospital

Investigate the prevalence of CAM use among paediatric cancer patients in a tertiary care hospital

Male and female patients less than 18 year of age, or their parents

n = 277

Patients less than 18 year of age clinical diagnosed with any type of cancer for more than three months. Patients with any comorbidities were excluded

7, 6% used CAM, most common Aryurveda. None of the parents disclosed the CAM use to the oncologists

NR

Singendonk M, 2013 [40]

Paediatric cancer

Questionnaire

Prospective multicentre study

Six academic hospitals in the Netherlands

Investigate the prevalence of CAM use, possible determinants of use, parental attitude towards communication and research on CAM therapies

Parents of children with cancer

n = 304

Parents 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 excluded

42,4% 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 effective

No funding

Susilawati D, 2016 [41]

Cancer diagnosis in children

Questionnaire

Cross-sectional study

Paediatric department of a hospital in Indonesia

Explore and compare perspectives (parents and health care professionals) on CAM in children with cancer

Caretakers of children with cancer

n = 176

All parents of children with cancer who were hospitalized or visited the clinic from September 2013 to October 2014

54% 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 cancer

Noord-Zuid Programma, The Stichting Medicines for ALL and the doctor 2 Doctor Program

Tautz C, 2005 [46]

Children with cancer

Expert opinion

NA

Child and adolescence medicine department of the general hospital Herdecke, Germany

To provide an overview of the CAM methods most commonly used in the treatment of children with cancer

Parents and doctors

NA

NA

The theoretic bases for anthroposophical medicine, homeopathy, phytotherapy, Boswellia preparations, vitamins, enzymes, diary supplements and psycho-oncology are described

NR

Turhan AB, 2016 [10]

Childhood cancer

Questionnaire

Cross-sectional study

Outpatient paediatric oncology clinic

To 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 information

Parent of children with cancer

n = 74

Children 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 excluded

67.5% used these products, main source of information was internet, used CAM without information healthcare professionals, incorporate it into conventional care

NR

  1. NA Not applicableM, NR Not Reported, aExcluded from further analysis due to either poor methodological quality or other bias, bTCAM, Traditional CAM