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Aboriginal and Torres Strait Islander peoples' perceptions of quality of life and wellbeing and how they are measured: a systematic review protocol

Kite, Elaine BAAA, BPHC; Davy, Carol BMge, PhD; Gibson, Odette BAppHSc, GradCertHlthEcon, PhD; McBride, Katharine BHSc, GCertEc, MHlthEc&Pol; Brown, Alex BMed, MPH, PhD, FCSANZ, FRACP (Hon)

JBI Database of Systematic Reviews and Implementation Reports: July 2014 - Volume 12 - Issue 7 - p 138–147
doi: 10.11124/jbisrir-2014-1529
SYSTEMATIC REVIEW PROTOCOLS

Review objective The objective of this review is to:

1. Identify tools used to measure quality of life (QoL) and wellbeing in Aboriginal and Torres Strait Islander Australian peoples.

2. Identify and synthesize Aboriginal and Torres Strait Islander peoples' perceptions of QoL and wellbeing.

Background The concept of QoL is recognized as being both multidimensional and vague.1 Theoretical conceptualizations of QoL are diverse and make identification of a common definition difficult. The lack of consensus is due in part to the multidisciplinary application of the concept which is compounded by multiple interpretations and measurements.2 The Australian Centre on Quality of Life3 provides a comprehensive list of well over a thousand instruments that have been developed for measuring QoL across a range of disciplines in the general population.

Two broad perspectives to QoL exist. The first is distinguished by the global context in which it operates4 and is evidenced by the inclusion of socioeconomic status and the range of other social factors identified as being essential for meeting the needs of both individuals and communities.5 The World Health Organisation Quality of Life (WHOQoL) group adopts this broader more global perspective incorporating the social features in its definition of quality of life.6

[Quality of Life] is an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, level of independence, social relationships and their relationship to salient features of their environment6.

The second perspective, health related quality of life (HRQoL) includes those factors that are directly attributable to health conditions and/or their associated interventions.7 Generic HRQoL instruments such as the Medical Outcome Study Short Form 36 (SF-36), the EuroQol 5D (EQ-5D) and the Sickness Impact Profile8 enable comparison between groups of patients with different diseases, while there are also numerous instruments used to measure specific health conditions.

QoL instruments are generally based on the perspective of western societies and in many cases language is simply translated for use in culturally and linguistically diverse countries.9 There are a number of problems with this process, not the least being the tacit assumption that culture and context have minimal impact on the applicability of the measures.10 The use of generic HRQoL instruments can also result in inadequate evaluation of subjective experiences of particular diseases and interventions11 and may have little or no relevance to certain patient groups and subsequent health outcomes. Evidence demonstrates that simply translating western diagnostic tools into other contexts fails to capture and measure critical concepts relevant to the new population.12 It is important that any QoL measure not only captures an individual's perceptions, but also their philosophical and conceptual notions of QoL and wellbeing in the context of their culture and value systems.13

The use of western diagnostic tools to measure Indigenous peoples' QoL has implications for Indigenous peoples generally14 and for Aboriginal and Torres Strait Islander peoples specifically. Unlike western cultures in which understandings and perceptions of health and wellbeing are derived from a biomedical model regarding physical functioning and perceptions of health,15 Australian Aboriginal and Torres Strait Islander peoples' view of health pervades the social and cultural context in which many live and their ways of being.16

For many Australian Aboriginal and Torres Strait Islander peoples, there are complex relationships between natural and spiritual worlds involving interconnections between themselves, their community structures and their environment.17 Their creation beliefs shape their lives, spirituality, values, attitudes, concepts, language and their relationships to the physical and material world.18 Although supernatural intervention and sorcery may be considered a cause of illness, there is also the perception that personal illness or injury is a manifestation of the struggles in maintaining the balance between their spiritual, physical and emotional wellbeing and the world around them.19

While there have been a number of studies which have attempted to conceptualise QoL and wellbeing from Aboriginal and Torres Strait Islander peoples' perspectives, to our knowledge this is the first systematic literature review which specifically aims to bring together and better understand the findings from these studies. Therefore, this systematic literature review will focus on understanding Australian Aboriginal and Torres Strait Islander peoples' definition of QoL, inclusive of wellbeing. In addition, this systematic literature review will also identify the instruments and/or measures that have already been specifically developed to measure Australian Aboriginal and Torres Strait Islander peoples' QoL.

1. Wardliparingga Aboriginal Research Unit, South Australian Health and Medical Research Institute, Adelaide, South Australia

2. Division of Health Sciences, School of Population Health, University of South Australia, Adelaide, South Australia

3. Professor, South Australian Health and Medical Research Institute

Corresponding author:

Elaine Kite,

Elaine.Kite@sahmri.com

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Inclusion criteria

As the first objective of this review is to simply identify and report on those tools that have been used to date to measure QoL and wellbeing in Aboriginal and Torres Strait Islander Australian peoples rather than synthesise the results of the studies that have used the tools, a detailed PICo has not been presented to directly correspond to this objective. All studies that report on QoL or wellbeing in Aboriginal and Torres Strait Islander Australian peoples will be retrieved to identify which tool has been employed. The following PICo elements will be used to address objective two of this review.

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Types of participants

This review will consider studies that include Aboriginal and Torres Strait Islander peoples.

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Phenomena of interest

The phenomena of interest for objective two is how Australian Aboriginal and Torres Strait Islander peoples perceive quality of life and wellbeing.

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Context

The review will consider studies conducted in Australia.

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Types of studies

For objective one, all qualitative and quantitative studies identifying tools used to measure QoL or wellbeing for Aboriginal and Torres Strait Islander peoples will be considered.

For objective two, the review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research.

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Search strategy

The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilised in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies.

The databases to be searched include:

EBSCO CINAHL

PUBMED

SCOPUS

PsychInfo

Embase

The search for unpublished studies will include:

Australian Institute of Aboriginal and Torres Strait Islander Studies

Australian Indigenous Health InfoNet

Initial keywords to be used will be:

Indigenous Australian; Aboriginal; Aborigine; Torres Strait Islander; quality of life; personal satisfaction; values; wellbeing; traditional healers; ngangkari; maparn; ngurra; tjurkurrpa; walytja; Kanyini; Kanyirninpa; Danalaig; beliefs; social capital; resilience; self-determinant; connectedness; cultural respect; cultural integrity; cultural continuity

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Assessment of methodological quality

No appraisal will be undertaken for objective one. Tools used to measure QoL and wellbeing will be identified and described leaving the quality of the studies that use the tools as incidental.

For objective two qualitative papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using the standardized critical appraisal instrument, the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer.

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Data collection

For objective one, descriptive information on the tool used to measure the QoL or wellbeing for Aboriginal and Torres Strait Islander peoples will be extracted, including the name of the tool, the domains of QoL and wellbeing, the number of items, the scale of measure used, the year developed and whether or not validated.

For objective two qualitative data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the interventions, populations, study methods and outcomes of significance to the review question and specific objectives.

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Data synthesis

For objective one information about each tool will be displayed in tabular format with narrative where required.

For objective two qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesised findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible the findings will be presented in narrative form.

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Conflicts of interest

There are no conflicts of interest.

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Acknowledgements

This systematic literature review is part of work which is supported by a Centre for Research Excellence grant from the Australian Primary Health Care Research Institute.

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References

1. Bérenger V, Verdier-Chouchane A. Multidimensional measures of well-being: standard of living and quality of life across countries. World Development. 2007;35(7):1259-76.
2. Barcaccia B, Esposito G, Matarese M, Bertolaso M, Elvira M, De Marinis MG. Defining Quality of Life: A Wild-Goose Chase? 2013;9(1):185-203.
    3. Australian Centre on Quality of Life. Instruments 2011. [01 February 2014]. Deakin University. Available from http://www.deakin.edu.au/research/acqol/site-info.php
      4. Costanza R, Fisher B, Ali S, Beer C, Bond L, Boumans R, et al. Quality of life: An approach integrating opportunities, human needs, and subjective well-being. 2007;61(2):267-76.
        5. Haas BK. Clarification and Integration of Similar Quality of Life Concepts. 1999;31(3):215-20.
          6. Group W. The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. 1995;41(10):1403-9.
            7. Fagerlind H, Ring L, Brülde B, Feltelius N, Lindblad ÅK. Patients' understanding of the concepts of health and quality of life. 2010;78(1):104-10.
              8. Wood-dauphinee S. Assessing quality of life in clinical research: from where have we come and where are we going? 1999;52(4):355.
                9. Crosby RD, Kolotkin RL, Williams GR. Defining clinically meaningful change in health-related quality of life. 2003;56(5):395-407.
                  10. Herdman M, Fox-Rushby J, Badia X. 'Equivalence' and the translation and adaptation of health-related quality of life questionnaires. 1997;6(3):0-.
                    11. Van Widenfelt BM, Treffers PD, De Beurs E, Siebelink BM, Koudijs E. Translation and cross-cultural adaptation of assessment instruments used in psychological research with children and families. Clinical child and family psychology review. 2005;8(2):135-47.
                    12. Traube D, Dukay V, Kaaya S, Reyes H, Mellins C. Cross-cultural adaptation of the Child Depression Inventory for use in Tanzania with children affected by HIV. 2010;5(2):174-87.
                      13. Canino G, Alegría M. Psychiatric diagnosis - is it universal or relative to culture? 2008;49(3):237-50.
                        14. Archibald L. Decolonization and healing: Indigenous experiences in the United States, New Zealand, Australia and Greenland: Aboriginal Healing Foundation; 2006.
                          15. Stewart AL, Hays RD, Ware JE. The MOS short-form general health survey: reliability and validity in a patient population. Medical care. 1988:724-35.
                            16. Maher P. A review of 'Traditional' Aboriginal Health Beliefs. Australian Journal of Rural Health. 1999;7(4):229-36.
                            17. Vicary DA, Bishop BJ. Western psychotherapeutic practice: engaging Aboriginal people in culturally appropriate and respectful ways. Perth, Western Australia: Curtin University of Technology; 2005.
                              18. Grieves V. Aboriginal spirituality: Aboriginal philosophy, the basis of Aboriginal social and emotional wellbeing: Cooperative Research Centre for Aboriginal Health Casuarina, NT; 2009.
                                19. Brown A.(2009). Kurunpa [Spirit]: Exploring the Psychosocial Determinants of Coronary Heart Disease among Indigenous men in Central Australia PhD Thesis, School of Population Health, The University of Queensland. Brisbane
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                                  Appendix I: Appraisal instruments

                                  QARI appraisal instrument

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                                  Appendix II: Data extraction instruments

                                  QARI data extraction instrument

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                                  Keywords:

                                  Indigenous Australian; Aboriginal; Aborigine; Torres Strait Islander; quality of life; personal satisfaction; values; wellbeing; traditional healers; ngangkari; maparn; ngurra; tjurkurrpa; walytja; Kanyini; Kanyirninpa; Danalaig; beliefs; social capital; resilience; self-determinant; connectedness; cultural respect; cultural integrity; cultural continuity

                                  © 2014 by Lippincott williams & Wilkins, Inc.