| Literature DB >> 34028618 |
Wendy Gifford1, Margo Rowan2, Peggy Dick3, Shokoufeh Modanloo4, Maggie Benoit3, Zeina Al Awar4, Liquaa Wazni4, Viviane Grandpierre5, Roanne Thomas5, Lindsey Sikora6, Ian D Graham4,7,8.
Abstract
PURPOSE: The purpose of this systematic review is to synthesize the evidence on the types of interventions that have been utilized by Indigenous Peoples living with cancer, and report on their relevance to Indigenous communities and how they align with holistic wellness.Entities:
Keywords: Cancer survivorship; Healthcare interventions; Indigenous Peoples; Systematic review
Mesh:
Year: 2021 PMID: 34028618 PMCID: PMC8464576 DOI: 10.1007/s00520-021-06216-7
Source DB: PubMed Journal: Support Care Cancer ISSN: 0941-4355 Impact factor: 3.603
Summary of tools used to assess relevence to Indigenous communities and methodological quality of studies
| Name of tool | Purpose of tool | Key categories | Scoring system |
|---|---|---|---|
| Evidence of relevance to Indigenous communities (36, 37) | To assess transparency in reporting of the interventions’ relevancy to participating Indigenous communities and members | •Alignment of study design and measures to community or participants’ values, beliefs, and knowledge systems •Alignment to local priorities •Relevance of intervention to participating communities or participant •Vetting of study protocol by local community members | Each item was rated as: 0=not reported, 1=partial evidence; 2=explicit evidence. Ratings were totalled to create a composite score where: 0=none, 1–3=weak, 4–6=moderate, 7–8=strong evidence of the interventions’ relevancy to participating Indigenous communities and members |
| McMaster Critical Review tools: Quantitative (38) | To assess methodological quality of quantitative studies | •Selection bias •Study design •Confounders •Blinding •Data collection methods •Withdrawals and dropouts •Intervention integrity •Analysis appropriation | Each item was rated as 0 (not present) or 1 (present) and the number obtained divided by the total number of possible points to obtain a score of 0–1. Studies were categorized as: weak (0–.25), weak-moderate (.26–.50), moderate (.51–.75), strong (.76–1.0). |
| McMaster Critical Review tools: Qualitative (39) | To assess methodological quality of qualitative studies | •Study purpose •Relevance of literature •Study design •Sampling •Data collection clarity •Data collection procedural rigor •Analytical rigor •Auditability •Theoretical connections •Overall rigor •Conclusions and implication | Each item was rated as 0 (not present) or 1 (present) and the number obtained divided by the total number of possible points to obtain a score of 0–1. Studies were categorized as: weak (0–.25), weak-moderate (.26–.50), moderate (.51–.75), strong (.76–1.0). |
| Mixed Methods Appraisal tool (MMAT) (40, 41) | To assess methodological quality of mixed methods studies | •Clarity of research questions •Qualitative approaches •Quantitative randomization/blinding/confounders •Quantitative sampling/measures/analysis •Mixed-methods approaches | Each item was rated as 0 (not present) or 1 (present) and the number obtained divided by the total number of possible points to obtain a score of 0–1. Studies were categorized as: weak (0–.25), weak-moderate (.26–.50), moderate (.51–.75), strong (.76–1.0). |
RCTs randomized control trials
Fig. 1PRISMA flow diagram
Characteristics of included studies
| Intervention/program: name and description | Evidence of relevance to Indigenous communities* | Study(s) | Country and setting | Sample size, participants, ethnicity, age, sex | Study design** | Quality assessment rating*** |
|---|---|---|---|---|---|---|
•Designed according to principles of best practice for developing acceptable and useful resources for Aboriginal communities. | Moderate • Intercultural approach with Indigenous healthcare service providers. • Community-driven culturally relevant intervention. | Bierbaum (2017) | Australia, Organizations that deliver health services to Aboriginal people | • • Health care providers • Australian Aboriginal and Torres Strait Islander •Age= unspecified •67% female, 33% male | Non-experimental •Survey | Weak-moderate •Validity and reliability of data collection tools not reported. •Numbers and reasons for dropouts not indicated. •Consistency of intervention not reported. |
•Refines, expands, and adapts various navigator/community education programs to address Native American communities’ and members’ needs throughout continuum of cancer care: • Educational workshops—24 h of content in a series of 3–6 workshops to encourage healthy behaviors, increase participants’ knowledge, and address barriers to screening or healthy behaviors. • Family Fun Events—held in conjunction with each workshop series, to promote the workshops, collect data, assess knowledge retention, and disseminate workshop findings. | Moderate • Navigators and collaborators from community. • Local navigators informed workshop topics. • Intervention theory adaptable to local community needs. | Burhansstipanov (2012) | USA, Community | • •Survivors •Native American •18+ yrs. •75% female. | Non-experimental •Survey (pre/post) | Weak-moderate •Validity and reliability of data collection tools not reported. •Numbers and reasons for dropouts or withdrawals not indicated. •Consistency of intervention not reported. |
| Burhansstipanov (2014) | USA, Community | • •Survivors •Native American •18–95 yrs. •70% female. | Non-experimental •Survey (pre/post) | |||
| Krebs (2013) | USA, Community | •Survivors and Healthcare Providers • | Non-experimental •Survey (pre/post) | |||
• • Navigators called • Education Brochure of risk factors, e.g., age of menopause, family history of breast cancer. | Moderate • Materials reviewed by community and cultural components added. • Participants supported by local Indigenous navigators during care | Dignan (2005) | USA, Community | • •Survivors •Native American •Average=54 yrs. •100% female. | Experimental (RCT) •Survey (pre/post) | Weak-moderate •Confounding differences between groups not reported. •Validity and reliability of data collection tools not reported. •Consistency of intervention not reported. •Intention-to-treat not reported for analyzing results (where all participants randomized are included in analysis, and analyzed according to originally assigned group, regardless of what treatment, if any, they received). |
•Help AI patients negotiate the Indian Health Service (IHS) system | Weak • Community relevant intervention. | Dockery (2018) | USA, Hospital | • •Survivors • Native American •Median age= 45 yrs. •100% female | Non-experimental •Medical records—retrospective review | Weak-moderate •Validity and reliability of data collection tools not reported. •Consistency of intervention not reported. |
•Monthly 2-h group counseling and education sessions ( • Content included group counseling, education modules, and presentations by content experts. | Weak • Local coordinators facilitated groups. • Educational contents developed with local community. | Doorenbos (2010) | USA, Community | • •Survivors and caregivers •Average=53 yrs. • Native American and Alaska Natives •100% female | Non-experimental •Survey (post) | Moderate •Validity and reliability of data collection tools not reported. •Consistency of intervention not reported. |
•For rural Peruvian women with cervical neoplasia before loop excisional procedures. •Culturally sensitive video discusses lower genital tract anatomy; cervical neoplasia; and the indications, preparation, procedure, complications, and postoperative information on loop excision surgery. | Weak • Culturally sensitive video made available in native language. | Ferris (2015) | Peru, Medical Clinic | • •Survivors •Peruvian •18+ yrs. •100% female | Quasi-experimental •Survey (pre/post) | Weak-moderate •Validity and reliability of data collection tools not reported. •Numbers and reasons for dropouts or withdrawals not indicated. •Consistency of intervention not reported. |
• Navigators (hospital-based and community) assist: • Navigating therapy • Obtaining medications • Insurance issues • Communication with medical providers •Travel logistics •Psycho-social support. •Community research representatives provide cancer education, network with local health resources, collect data, and serve as liaisons between cancer center, patient navigators, and patients or tribal governments. | Moderate • Community reps involved in delivering intervention, collecting data, developing liaisons. • Patient materials translated into native language. • Tribal leadership and Indigenous health organization consulted from onset. | Guadagnolo & Boylan (2011) | USA, Hospital | • •Survivors • Native American • Unspecified •55% female | Non-experimental •Medical records | Moderate •Outcome assessors not blinded. •Numbers and reasons for dropouts or withdrawals not indicated. •Consistency of intervention not reported. |
| Guadagnolo & Cina (2011) | USA, Hospital | • •Survivors • Native American •18+ yrs. •40% female | Non-experimental •Survey (pre/post) | |||
| Petereit (2008) | USA, Community | • •Survivors • Native American • Unspecified • Unspecified | Non-experimental •Survey (pre/post) | |||
| Petereit (2011) | USA, Community | • • Survivors and caregivers • Native American • Unspecified • Unspecified | Non-experimental •Survey (pre/post) | |||
Content includes: •Cancer concerns •What is cancer? •Screening and early detection •Diagnosis and staging •Risks and risk reduction •Basics of treatment •Support for patients and caregivers. | Moderate • Educational materials tailored to community needs. • Tribal community liaisons involved in recruitment, tailoring and dissemination of materials to community. | Hill (2010) | USA, Community | • •Healthcare Providers • Native American and Alaska Native •Unspecified. •89% female | Non-experimental •Survey (pre/post) | Weak-moderate •Validity and reliability of data collection tools not reported. •Consistency of intervention not reported. |
• Symptom management booklet/resource guide: •Cancer etiology •Diagnosis, treatment, and follow-up •Cancer symptoms management •Strategies and tips for pain, body changes, and changing activity levels •Recommendations on how to communicate with providers, family members, and others. •Self-management video: •Cancer facts /myths •Coping with cancer •What to expect after diagnosis and treatment •Support systems •Strategies/tips for pain relief, fatigue, depression, function • Spirituality and balance | Moderate • Educational materials tailored to community needs. • Tribal community liaisons involved in recruitment, tailoring and dissemination of materials to community. | Hodge (2016) | USA, Community | • •Survivors and caregivers • Native American •18+ yrs. •70% female | Quasi-experimental •Survey (pre/post) | Weak-moderate •Validity and reliability of data collection tools not reported. •Numbers and reasons for dropouts or withdrawals were not indicated. •Consistency of intervention not reported. |
•To build family capacity by improving knowledge and skills of breast cancer survivors and their family. •Emphasis on later stage of recovery care. • 4, 2-h educational sessions over a 4-month period, including materials and training to access information on cancer and communicate with health care providers. | Moderate • Intervention materials culturally tailored. • Local community food supported “feeding the spirit”. • Stories used with cultural discussion groups. | Mokuau (2008) | USA, Community | • •Survivors and caregivers •Native Hawaiian •Average=55 yrs. •100% female | Experimental (RCT) •Survey (pre/post) | Moderate •Confounding differences between groups not reported. •Consistency of intervention not reported. |
| Mokuau (2012) | USA, Community | • •Survivors and caregivers •Native Hawaiian •Unspecified •100% female | Experimental (RCT) •Survey (pre/post) | |||
• Interactive audio and video telemedicine program for high-risk patients with breast cancer. • Included telehealth coordinators and navigators | Weak • Tribal health consortium involve in telemedicine platform. | Pruthi (2013) | USA, Medical clinic | • •Survivors •Alaska Native • Unspecified •100% female | Non-experimental •Survey (cross-sectional) | Weak •Confounding differences between groups not reported. •Validity and reliability of data collection tools not reported. •Numbers and reasons for dropouts or withdrawals not indicated. •Consistency of intervention not reported. |
• Telemedicine for rural cancer care involving videoconferencing consultation sessions with patients. | None • Not identified. | Sabesan (2012) | Australia, Hospital | • •Survivors • Australian Aboriginal •Unspecified •52% female. | Non-experimental •Electronic databases •Medical records | Weak •Confounding differences between groups not reported. •Validity and reliability of data collection tools not reported. •Numbers and reasons for dropouts or withdrawals not indicated. •Consistency of intervention not reported. |
•Facilitated access to services •Fostered social interaction •Provided culturally safe space •Built working relationships with services and agencies. | Weak • Intercultural approach with Indigenous healthcare service providers. | Cuesta-Briand (2015) | Australia, Community | • • Healthcare Providers •Australian Aboriginal •Unspecified •92% female | Unspecified qualitative •Interviews | Strong •No theoretical perspective identified. •Role of researcher and relationship with participants not described. •Process of development of decision trail not identified. |
| Cuesta-Briand (2016) | Australia, Community | • • Healthcare Providers • Australian Aboriginal •Unspecified •92% female | ||||
• Self-directed guidebook • Resource directory • Motivational video. | Moderate • Cultural constructs explored for toolkit. • Community representatives involved in framework development and validation • Video pilot tested for cultural appropriateness | Hodge (2012) | USA, Community | • •Survivors and their family • Native American (Southwest) •18+ yrs. •72% females. | Grounded theory •Focus groups | Strong •No theoretical perspective identified. •Role of researcher and relationship with participants not described. •Purposeful sampling selection not described. |
•Improving cancer care for Australian Aboriginal patients • The cancer care team consisted of an Australian Aboriginal health worker, counsellor, and enrolled nurse employed for 2 days a week, supported by a GP. •Included follow-up of abnormal test results, Support at first diagnosis, Yarning circle, Palliative care, Carer support, Prevention programs. | Moderate • Stories used with cultural discussion groups • Intercultural approach with Indigenous healthcare service providers. • Community-driven culturally relevant intervention. | Ivers (2019) | Australia, An Australian Aboriginal community-controlled health service in New South Wales. | • •Health care provider, clients, and stakeholder • Australian Aboriginal •Age= 54 to 81 yrs. •90% female, 10% male | Ground theory •Semi-structured interviews | Moderate •Purposeful sampling selection not described. •Role of researcher and relationship with participants not described. • Not well addressed theoretical perspective |
• Cancer education where two or more people read aloud while listening to a scripted conversation. •Readers are arranged among listeners to create a conversational, inclusive experience. | Moderate • Oral tradition used as a way of teaching. • Used culturally respectful, holistic ways of inquiry. | Cueva (2010) | USA, Community | • •Survivors and caregivers •Alaska Native (Athabascan, Tlingit, Inupiat, Yup’ik, Aleut, Chippewa) •Average=45 yrs. •92% female. | Organic inquiry design •Interviews •Journaling •Field notes •Written reflections and discussions. | Weak-moderate •Purposeful sampling selection not described. •Role of researcher and relationship with participants not described. •Sufficient description of participants and site not described. •Process of inductive analysis and development of decision trail not described. •4 elements of study rigor/trustworthiness not described (Credibility, Transferability, Dependability, Confirmability). |
•45-min play to promote cancer education as a collaborative effort, incorporating stories shared by people throughout Alaska. | Weak • Collaborated with community to make play • Storytelling used to understand community’s way of knowing. | Cueva (2005) | USA, Community | • •Survivors •Alaska natives •40+ yrs. • 85% female. | Mixed-methods triangulation •Survey (post) •Discussions. | Weak-moderate •Qualitative and quantitative aspects not effectively integrated to answer research question. •The consistency of intervention not reported. |
• Culturally sensitive brochures for patients • Guidelines for providers. • Continuing Medical Education (CME) for healthcare providers. | Moderate • Tribal groups, Elders, and traditional healers involved in creating culturally appropriate materials. • Instruments tailored in consultation with tribal group. • Cultural components discussed to ensure relevance and sensitivity of materials. | Elliott (1999) | USA, Community | • •Healthcare Providers and Elders • Native American (Anishinabe) •Unspecified •Unspecified | Mixed Methods exploratory •Focus groups •Interviews •Survey. | Moderate •Qualitative and quantitative aspects not adequately integrated. •Outcome assessors not blinded to intervention. •Cofounders not accounted for analysis. |
• Narrated in Navajo language with English subtitles • Provides information on breast cancer treatment options, • Produced by a Navajo breast cancer survivor and oncology nurse. | Weak • Video translated into native language. | Sanderson (2010) | USA, Community | • •Survivors and healthcare providers • Native American (Navajo) •18+ yrs. •100% female. | Mixed-methods triangulation •Interviews •Survey (post). | Weak-moderate •Numbers and reasons for dropouts or withdrawal were not reported. •Cofounders not accounted for analysis. •Qualitative and quantitative aspects not adequately integrated. |
•Art therapy project that brings American Indian cancer survivors and their family members together. •3 workshops promote stress reduction behaviors. | Moderate • Community-driven culturally relevant intervention. • Emergent design allowed tribal members to revise workshops for better alignment with survivor needs. | Warson (2012) | USA, Community | • •Survivors • Native American •Unspecified •100% female. | Mixed-methods triangulation • Survey (pre/post) •Thematic analysis of art pieces • Interviews. | Moderate •Qualitative and quantitative aspects not effectively integrated to answer research question. •Outcome assessors not blinded to intervention. |
*Evidence of relevance to Indigenous communities: 0=none, 1–3=weak, 4–6=moderate, 7–8=strong
**Design: label identifies the most prominent study design. Non-experimental designs include cross-sectional or pre-experimental studies in which there is no randomization and no control group. Quasi-experimental designs lack full control or randomization for example of participants, location, and timing of the intervention. Experimental designs use randomization and control, for example randomized control trial (RCT). Qualitative designs: label from cited paper where specified. Mixed-methods designs: label assigned according to mixed methods design types identified by Creswell and Clark (2007).
***Quality assessment rating: 0–.25= weak, .26–.50=weak-moderate, .51–.75= moderate, .76–1.0=strong
Interventions aims and participant target groups
| Study | Aims | Target groups | ||||
|---|---|---|---|---|---|---|
| Support and improve healthcare journey | Increase knowledge | Psycho-social support | Promote dialogue about cancer | Cancer survivors/community members | Health care providers | |
| ( | ( | ( | ( | ( | ( | |
| Bierbaum (2017) | ✓ | ✓ | ||||
| Burhansstipanov (2012) | ✓ | ✓ | ✓ | |||
| Burhansstipanov (2014) | ✓ | ✓ | ✓ | |||
| Cuesta-Briand (2015) | ✓ | ✓ | ✓ | |||
| Cuesta-Briand (2016) | ✓ | ✓ | ✓ | ✓ | ||
| Cueva (2005) | ✓ | ✓ | ✓ | |||
| Cueva (2010) | ✓ | ✓ | ||||
| Dignan (2005) | ✓ | ✓ | ||||
| Dockery (2018) | ✓ | ✓ | ||||
| Doorenbos (2010) | ✓ | ✓ | ||||
| Elliott (1999) | ✓ | ✓ | ✓ | ✓ | ||
| Ferris (2015) | ✓ | ✓ | ||||
| Guadagnolo & Boylan (2011) | ✓ | ✓ | ||||
| Guadagnolo & Cina (2011) | ✓ | ✓ | ||||
| Hill (2010) | ✓ | ✓ | ✓ | ✓ | ||
| Hodge (2012) | ✓ | ✓ | ||||
| Hodge (2016) | ✓ | ✓ | ||||
| Ivers (2019) | ✓ | ✓ | ✓ | |||
| Krebs (2013) | ✓ | ✓ | ✓ | ✓ | ||
| Mokuau (2008) | ✓ | ✓ | ✓ | |||
| Mokuau (2012) | ✓ | ✓ | ✓ | |||
| Petereit (2008) | ✓ | ✓ | ✓ | |||
| Petereit (2011) | ✓ | ✓ | ||||
| Pruthi (2013) | ✓ | ✓ | ||||
| Sabesan (2012) | ✓ | ✓ | ||||
| Sanderson (2010) | ✓ | ✓ | ✓ | |||
| Warson (2012) | ✓ | ✓ | ||||
Intervention ingredients and study outcomes * [+] positive influence; [o] no influence or inconclusive; [−] negative influence
Descriptions of outcomes (n=27 studies)
| Study | Descriptions of outcomes |
|---|---|
| Bierbaum (2017) | •Majority of participants agreed or strongly agreed that the flipchart and flyer were valuable, culturally appropriate, useful for explaining cancer and the Aboriginal cancer patient journey |
| Burhansstipanov (2012) | •Increased scheduling and attending cancer screening/diagnostic appointments |
| Burhansstipanov (2014) | •Improved referrals and access to care •Increased knowledge by 28% •Workshop content identified as useful by 90% of participants; 92.3% would recommend to others |
| Cuesta-Briand (2015) | •Unresolved tensions identified between mainstream and Indigenous people for delivering the program included: (1) flexibility and resistance to formal structuring, (2) understanding of confidentiality |
| Cuesta-Briand (2016) | •Increased access to cancer services •Fostered social interaction and built relationships |
| Cueva (2005) | •66.1% shared they learned about cancer (K) •61.7% intended to change their behavior (K) •94.5% felt more comfortable talking about cancer |
| Cueva (2010) | •Improved knowledge, attitudes, beliefs (K) •Improved engagement in meaningful conversations |
| Dignan (2005) | •Increase in the proportion of women having a mammogram within 12 months ( |
| Dockery (2018) | •No statistically significant change in initiation or completion of treatment |
| Doorenbos (2010) | •High level of satisfaction with intervention |
| Elliott (1999) | •Increased knowledge ( •92% agreement the intervention was culturally sensitive |
| Ferris (2015) | •Increased calm ( |
| Guadagnolo & Boylan (2011) | •Decreased # treatment interruption days (mean, 1.7 days; 95% CI, 1.1–2.2 days) |
| Guadagnolo & Cina (2011) | •Improved satisfaction with health care services ( |
| Hill (2010) | •Increased knowledge ( •Very likely/extremely likely to engage in behavioral change to ↓ cancer risk |
| Hodge (2012) | •Favorable views of toolkit materials—perceived to be relevant, informative, and easy to understand |
| Hodge (2016) | •Improved pain management ( |
| Ivers (2019) | •Improved access to cancer care services •Helped improve wellbeing •Services viewed as being culturally safe |
| Krebs (2013) | •Increased knowledge by 28.4% •Workshops perceived as fun, productive, interactive and effective |
| Mokuau (2008) | •Improved self-efficacy and coping •Social Support ( •Participants appreciated cultural tailoring of intervention |
| Mokuau (2012) | •Increased proportion of women performing breast self-exams •Improvements in: Self Efficacy ( •Social Support ( •Spiritual Support ( |
| Petereit (2011) | •Decreased # treatment interruption days (mean, 1.7 days; 95CI, 1.1–2.2 days) |
| Petereit (2008) | •Decreased treatment interruptions ( |
| Pruthi (2013) | •Patient satisfaction good or excellent by 98% of participants |
| Sabeson (2012) | •Increased specialist consultations and care utilized in hometowns |
| Sanderson (2010) | •Improved selection and adherence to treatment regimen •Reduced anxiety about treatment •Cultural images and graphics in video were culturally relevant |
| Warson (2012) | •Survey determined to be culturally biased and inconclusive •Reinforced a native concept of wellness that focused on the complex interaction between mind, body, spirit, and context |
*Wellness outcomes categories: P physical, M mental, E emotional, S spiritual, R response to intervention
Fig. 2Holistic wellness and response to the intervention outcomes identified in the literature