Psychological Distress,Caregiver Burden and Quality of Life Among Informal Carers of First Nations Australians Diagnosed With Cancer: A Cross-Sectional Study

Abstract

Introduction

Informal carers provide essential support for people diagnosed with cancer, however, the demands of caregiving can negatively impact their psychological wellbeing. There is a need to examine psychological wellbeing among carers of First Nations cancer patients to understand the impacts of caregiving within cultural contexts. Therefore, this study aims to quantify carer psychological distress, burden, and quality of life (QoL) among carers of First Nations Australian cancer patients - key indicators of carer wellbeing that may have implications for both carers and patients.

Methods

This prospective cross-sectional study recruited adult (≥18 years) carers of First Nations Australians diagnosed with cancer across six Queensland hospitals (July 2021-December 2024). Of 221 eligible carers, 172 (78%) participated in the study. Logistic regression models assessed association between carer characteristics with high psychological distress (Distress Thermometer, score≥4) and significant carer burden (six-item Zarit Burden Interview, score≥6); linear models assessed associations with QoL (CarerQoL-7D).

Results

165 (96%) carers approached were included in the analysis, of which 67% (n=111) identified as First Nations. High distress was reported by 43% (95% CI:36%-51%), 44% reported significant carer burden (95%CI:37%-52%), and mean CarerQoL-7D score was 9.7 (95%CI:9.3-10.1). Only prevalence of high distress differed between First Nations and non-Indigenous carers. For all carers as well as First Nations carers, clinical diagnosis of anxiety and/or depression was associated with high distress, significant carer burden and lower QoL.

Conclusion

To our knowledge, this study is the first to quantify the psychological wellbeing of carers of First Nations cancer patients in Australia. We observed no associations typically expected for wellbeing and distress among carers, except for with clinical anxiety/depression, suggesting that existing measures may not fully capture carer’s experiences in this population. These findings highlight the need for culturally appropriate measures co-designed with Indigenous communities to better assess and support carer wellbeing.

Plain Language Summary

Why this research matters Informal carers often provide essential support for relatives or friends living with cancer, such as helping them attend their medical appointments, with housework, and supporting them through their cancer journey. This role can be rewarding but can affect their wellbeing. Currently, very little is known about the wellbeing of carers who support First Nations Australians with cancer. This study wants to understand how these carers are affected by their caring role, so that our findings can guide policy and support services to improve their wellbeing. What we did Carers of First Nations Australians diagnosed with cancer were identified through patients or hospital staff in six Queensland hospitals. Their contact details were given to the research team, 172 agreed to participate. Carers answered questions about themselves and their health, and their wellbeing: carer distress (Distress Thermometer), burden (six-item Zarit Burden Interview), and quality of life (CarerQoL-7D). We looked for associations between sociodemographic and clinical factors with the wellbeing measures. What we found 165 carers were included in the analysis (67% of which were First Nations). Almost half of the carers reported high distress (43%) and significant carer burden (44%). There was a higher prevalence of high distress among First Nations carers compared to non-Indigenous carers. For all carers, having a anxiety/depression diagnosis was associated with high distress, significant carer burden and lower quality of life. Why this is important To the best of our knowledge, this study is the first to measure the wellbeing of carers of First Nations Australian cancer patients. While these findings highlight challenges carers face, there were few associations with other personal or clinical factors, indicating that the measures used may not fully capture their wellbeing. Culturally informed, co-designed tools are needed to better understand and support carers’ experiences.

Keywords

informal carer of First Nations cancer patients psychological distress caregiver burden quality of life (QoL)

Introduction

Carers are a critical source of support for people who are living with illness or disability. In Australia, there are approximately 3 million informal carers, defined as those who provide unpaid care for people living with illnesses or disability.¹ Informal carers are most often family members, friends, or other loved ones of the care recipient, who are often extensively involved in the daily routines of people living with cancer, such as assisting with household chores (e.g. shopping, cleaning), treatment (e.g. organising, transportation to appointments); and providing emotional support.^2,3 The support provided by informal carers often replaces care that would otherwise been provided by health professionals.⁴ Consequently, support from Australian informal carers provides a considerable benefit to the health system, saving approximately $80 billion per year.⁴ With an aging population and increasing cancer incidence, the number of informal carers is expected to grow.² Despite their significant contributions to cancer care and the general wellbeing of patients, informal carers typically receive little formal support or training.⁵ Inadequate support can lead to increased burden and poorer wellbeing, particularly among vulnerable populations such as carers of Indigenous people.⁶

Indigenous people globally experience higher prevalence of cancer, and poorer cancer outcomes compared with non-Indigenous populations.⁷ In Australia, Aboriginal and Torres Strait Islander people (hereafter respectfully referred to as First Nations peoples) experience 14% greater cancer incidence and 1.4 times higher mortality attributed to cancer than non-Indigenous Australians.^8,9 These disparities are shaped by the ongoing impacts of colonisation, including intergenerational trauma, systemic racism, socioeconomic disadvantage, and experiences of discrimination within healthcare settings.⁷ Such factors contribute to mistrust of health services, reduced engagement with screening and early diagnosis, and lower access to timely and culturally safe treatment.^5,7 Geographical inequalities further exacerbate these challenges. An estimated 59% of First Nations peoples live in regional or remote areas of Australia,¹⁰ compared with 27% of non-Indigenous Australians, which may limit access to specialist cancer care and supportive services. Together, these structural, social, and geographic factors increase the cancer burden among First Nations people and create additional demands on families and informal carers, who often provide substantial emotional, practical, and cultural support to patients.

Although caregiving can be a rewarding experience for some, strengthening relationships and fostering appreciation of life,^2,11 it is widely recognised as a source of considerable physical and psychological burden.^2,3 Evidence suggests that distress and unmet care needs reported by informal carers may be greater than those experienced by the patients themselves.^3,12 A carer’s wellbeing is influenced by multiple factors, including balancing their role as a carer alongside work commitments and parenting responsibilities; changes to social and community engagement; and the emotional strain of supporting a loved one through their cancer care journey.^2,3,13 Carers of Indigenous people are reported to experience similar challenges to other carers, but also experience additional stressors. These include unmet preferences for family-focused care, limited culturally competent health services, and overall poorer health compared with non-Indigenous carers.⁶ A systematic review of carers of Indigenous cancer patients from Australia, Canada, New Zealand, and the United States highlighted further challenges, such as explaining cultural values and needs to treatment teams, coping with experiences of racism in the healthcare setting, and navigating a health system often viewed with caution or mistrust by First Nations people.⁵

The wellbeing of carers is shaped by psychological, emotional, and functional aspects of health. Carers of First Nations peoples with cancer often have unmet mental and emotional support needs and may experience elevated levels of distress.¹⁴ Psychological distress reflects acute emotional responses to caregiving demands, while caregiver burden captures the perceived strain associated with caregiving roles, including mental, emotional, and physical demands. Quality of life (QoL) measures enables the assessment of the broader impact of caregiving on physical, social, and financial wellbeing. Together, these constructs represent related but distinct and complementary dimensions of carer wellbeing and provide a comprehensive understanding of the impact of caregiving.¹⁵ Although extensive research has assessed carer wellbeing in general cancer populations, the wellbeing of carers of First Nations cancer patients has not previously been quantified. There are several identified risk factors for poorer QoL among all carers such as sex, age, education level, and employment, however these factors have not been assessed for carers of First Nations cancer patients.¹⁶ Consequently, it is essential to assess carer wellbeing in this context, in the interest of sustaining wellbeing of both the carer and cancer patient.

The aim of this study is to investigate carer distress, burden, and QoL among informal carers of First Nations Australian cancer patients and to assess the relationship between demographic and clinical characteristics with carer distress, burden and QoL. To our knowledge, our study provides the first estimates of these wellbeing measures for carers of First Nations Australians with cancer. The findings of this study may improve understanding of carers’ experiences, and inform the development of culturally safe services, policies or interventions that support the wellbeing of carers of First Nations people and the patients they care for.

Methods

Study Design & Setting

This prospective cross-sectional study utilised survey data collected from informal carers of First Nations Australian cancer survivors. Carers were recruited from cancer care units in six Queensland hospitals that serve a wide range of patients from metropolitan, regional, and remote communities. Study recruitment occurred between July 2021 and December 2024, with a pause from December 2021 to May 2023 due to the impact of COVID-19. This study is part of the broader Supporting Our Carers Study (SOCS) project (Project ID: IN180100047). The overarching aim of the SOCS Project is to understand and assess the psycho-social needs of First Nations Australian cancer patients and their informal carers. The project was led by a senior Aboriginal researcher (GG), with support from First Nations Australian staff and community members in the development of the project resources and outputs. No a priori sample size or power calculation was performed for this cross-sectional survey. All eligible participants with available data from the SOCS Project were included in the analysis.

Ethics Approval

This study as part of the broader SOCS project was conducted in accordance with the Declaration of Helsinki (revised 2024),¹⁷ and has received approval from the following Ethics Committees:

The Northern Territory Department of Health and Menzies School of Health Research HREC (NTHREC; HREC ID: 2020-3790; 9^th September 2020); The University of Queensland (UQ) HREC (HREC ID: 2021/HE002242; 30^th September 2021) and the Queensland Government Metro South Hospital and Health Service HREC (HREC ID: HREC/2020/65533) on 10^th December 2020, which cover the approved study sites. The participating site-specific approvals were obtained from relevant Research Governance Offices (RGOs) at Princess Alexandra Hospital (MSHHS RGO); Royal Brisbane and Women’s Hospital (Metro North HHS RGO); Ipswich Hospital (West Moreton HHS RGO); Bundaberg Hospital (Wide Bay HHS RGO); Townsville Hospital (Townsville HHS RGO); and Cairns Hospital (Cairns HHS RGO).

Participants

Informal carers (i.e., unpaid, non-professional) of First Nations people with a cancer diagnosis were eligible to participate in the study if they had cared for someone within the past 2 years, were aged 18 years or older, able to understand English, and physically and mentally capable of participating. Participants could either identify as non-Indigenous, or First Nations Australian, as long as they care for First Nations cancer survivors. The carer’s eligibility was not restricted by when caregiving occurred within the past two years, nor by caregiving duration or intensity, or by stage of recipient’s illness. Multiple carers could be recruited for an individual cancer survivor. Broad eligibility criteria and inclusion of all available eligible participants helped minimize selection bias.

Recruitment & Data Collection Procedure

Participants were recruited using a selective, purposive sampling approach. Informal carers were identified by the patient or onsite project coordinator. Onsite coordinators assessed carers for eligibility and collected contact information for each person nominated. If eligible, their details were given to the university research team who contacted them to provide a study information sheet and seek their interest in participating in the study, and if interested a day and time was agreed to complete the survey. Eligibility was re-confirmed, informed consent was obtained (written consent in person, informed verbal consent on the phone) and the study survey was completed by an interviewer- or was self-completed by the participant. Participants were provided with a $40 gift card to reimburse their time participating in the study and asked if they would like a summary of research finding at the end of the study. All participant data were de-identified prior to analysis. Identifiable information (including name, phone number, email address and residential address) was removed during data entry into a Microsoft Excel database, and each participant was assigned a unique study identification code. De-identified data were securely stored on the University of Queensland’s Research Data Manager (RDM) platform, a secure cloud-based storage system accessible only to the research team members responsible for data management and analysis.

Variables

The study survey collected self-reported sociodemographic information including: participants age in years (categorised into <45 years, ≥45); Aboriginal and/or Torres Strait Islander origin; sex; marital status; postcode of residence; current main employment situation; highest level of education completed below; relationship to the patient; and self-reported medical conditions at the time of taking the survey (e.g. anxiety, asthma, cancer, depression, diabetes, heart disease, high blood pressure, etc.,) (See Table 1). We identified carers who had self-reported a diagnosis of anxiety and/or depression (yes, no). All other diagnoses were used to identify how many other conditions a carer had (none or one condition, or two or more conditions, excluding diagnoses of anxiety and depression).

Table 1.

Carers Characteristics Overall and by Indigenous Status

Measure	All (n=165)		First Nations (n=111)		Non-indigenous (n=54)		p-value^∼
Measure	n	(%)	n	(%)	n	(%)	p-value^∼
CARER DETAILS
Age group
<45 years	61	(37%)	51	(46%)	10	(19%)	0.00062
≥45	104	(63%)	60	(54%)	44	(81%)
Age (mean, SD)	50.5	(15.5)	47.2	(14.7)	57.5	(14.8)	<0.0001
Age (median, IQR)	50.2	(23.9)	48.6	(23.9)	59.1	(19.2)	<0.0001
Sex
Female	127	(77%)	87	(78%)	40	(74%)	0.538
Male	38	(23%)	24	(22%)	14	(26%)
Marital status
Partner/de facto/married	102	(62%)	54	(49%)	48	(89%)	<0.0001
Single/widowed/separated/divorced	63	(38%)	57	(51%)	6	(11%)
Relationship to patient
Family member/friend/other	106	(64%)	93	(84%)	13	(24%)	<0.0001
Wife/husband/partner	59	(36%)	18	(16%)	41	(76%)
Education level^*
Junior high school or below	17	(10%)	10	(9%)	7	(13%)	0.667
Senior high school	74	(45%)	49	(44%)	25	(46%)
Trade diploma	49	(30%)	36	(32%)	13	(24%)
Degree	25	(15%)	16	(14%)	9	(17%)
Current employment^@
Not working	91	(56%)	59	(54%)	32	(62%)	0.344
Working	71	(44%)	51	(46%)	20	(38%)
Medical conditions^#
None or one condition	108	(65%)	76	(68%)	32	(59%)	0.243
Two or more conditions	57	(35%)	35	(32%)	22	(41%)
Clinically diagnosed anxiety/depression
No	122	(74%)	82	(74%)	40	(74%)	0.978
Yes	43	(26%)	29	(26%)	14	(26%)
Remoteness of residence^§
Metropolitan areas	44	(27%)	21	(19%)	23	(43%)	0.0054
Regional	104	(63%)	77	(69%)	27	(50%)
Remote	17	(10%)	13	(12%)	4	(7%)
Living in a disadvantaged area^&
No	92	(56%)	66	(59%)	26	(48%)	0.170
Yes	73	(44%)	45	(41%)	28	(52%)
CARER REPORT of PATIENT CANCER TYPE
Cancer diagnosis^¥
Blood cancer	24	(15%)	7	(7%)	17	(31%)	<0.0001
Bone and soft tissue cancers	14	(9%)	8	(8%)	6	(11%)	0.485
Genitourinary cancers	21	(13%)	11	(11%)	10	(19%)	0.170
Colorectal, bowel and GI cancers	35	(22%)	23	(22%)	12	(22%)	0.988
Lung cancer	24	(15%)	17	(17%)	7	(13%)	0.558
Breast cancer	20	(13%)	15	(15%)	5	(9%)	0.344
Other⁺	37	(24%)	30	(29%)	7	(13%)	0.023

GI gastrointestinal.

*Highest level of education completed. Junior high school or below: did not complete primary school or had no formal schooling, primary school (Grade 1 to 6 in Queensland) or junior primary school (Grade 7 to 9 in Queensland). Senior high school: Grade 10 to 12 in Queensland. Trade diploma: trade or technical certificate or diploma. Degree: a tertiary degree (e.g., university, college).

@Current employment was reported by 162 (98%) carers (110 (99%) First Nations carers, 52 (96%) non-Indigenous carers).

#Diagnosed medical conditions: arthritis, asthma, cancer, diabetes, heart disease, high blood pressure, kidney disease, neurological condition, other (excluding anxiety/depression).

§Modified Monash Model (MMM) of remoteness.

&Socio-Economic Indexes for Areas (SEIFA) Index of Relative Socio-economic Advantage and Disadvantage: people living in postcodes with a disadvantaged score ≤2nd decile were identified as disadvantaged, those with scores >2nd decile were identified as not disadvantaged.

¥Cancer diagnosis was reported by 157 (95%) carers (103 (93%) First Nations carers, 54 (100%) non-Indigenous carers), who could report more than one cancer diagnosis.

+Other cancers included: skin, brain and central nervous system, head and neck, endocrine and gynaecological cancers.

∼p-value from Chi-squared tests for categorical measures, from an unpaired t-test for the mean age and Wilcoxon rank-sum test for median age row.

The Modified Monash Model (MMM)¹⁸ was used to define residential area (metropolitan areas, regional, remote/rural) via participant’s suburb and postcode. Living in an area of disadvantage was based on the participant’s residential postcode and the Australian Bureau of Statistics Socio-Economic Indexes for Areas (SEIFA),¹⁹ Index of Relative Socio-Economic Advantage and Disadvantage (IRSAD) state deciles,¹⁹ with deciles classified as being disadvantaged (≤2^nd decile, relative greater disadvantage and a lack of advantage) and not disadvantaged (3^rd to 10^th decile).

Measurements

Carer Psychological Distress

The Distress Thermometer (DT) was used to assess psychological distress amongst participants (see Supplemental Table 1).²⁰ The DT was selected due to its brevity, ease of administration, and widespread use as a validated screening tool for psychological distress in oncology settings.²¹ It has been previously used to screen distress amongst First Nations Australian cancer survivors.²² The DT is a single item visual ‘thermometer’ scale, ranging from zero (no distress) to 10 (extreme distress). Participants were asked to ‘indicate the number (0-10) that best describes how much distress you have been experiencing in the PAST WEEK including today.’ Distress was categorised into low distress (score<4) and high distress (score ≥4), informed by established recommended cutoff scores.²³

Carer Burden

Participants’ perceived carer burden was assessed using the 6-item Zarit Burden Interview (ZBI-6), a measure validated in informal caregiver populations, including those caring for people with cancer and chronic illness.²⁴ Whilst the ZBI-6 has not been validated for caregivers of First Nations Australian cancer patients, it was selected due to its established psychometric properties and relevance to key caregiving domains. The measure asks participants how they currently feel in relation to their caregiving experience, addressing key domains of: emotional strain; loss of control; social strain/isolation; and relationship strains. Response options are on a 5-point Likert scale (0= Never; 1= Rarely; 2= Sometimes; 3= Quite frequently; 4= Nearly always). Sum scores were calculated for each participant on a scale of 0-24. Caregiver burden was categorised into low burden (score<6) and significant caregiver burden (score≥6).²⁴

Carer Quality of Life (QoL)

Participants’ QoL was assessed using the CarerQoL-7D measure²⁵ to assess the impact caring has on them across seven areas: fulfilment; relational problems; mental health problems; physical health problems; problems combining care with daily activities; financial problems; and social support. The CarerQoL-7D includes both positive (items 1 and 6: fulfilment and social support) and negatively framed items (items 2-5, 7). Responses options were on a 3-point Likert scale, with positive items being scored as: 0= no; 1= some; 2= a lot of, and negative items having a reverse scoring. Sum scores out of the 7 items were calculated for each participant on a scale from 0 (poor QoL) to 14 (high QoL). The CarerQoL-7D is a validated measure of caregiver QoL for informal caregiver populations in cancer and palliative care settings; however it has not been validated for caregivers of First Nations Australians with cancer.^26,27

Statistical Methods

Demographic and outcome measures were summarised for all carers and stratified by Indigenous status with these measures were compared using Chi-squared tests for categorical measures, and an unpaired t-test and Wilcoxon rank-sum test were used to compare the continuous measure of age. Association between demographic and health measures with each outcome was assessed using a regression framework. Logistic regression models were fit for the binary outcomes (carer distress, carer burden) and linear regression models for the continuous outcome (carer QoL) with robust errors to take into account the potential correlation between the outcomes of participants caring for the same First Nations cancer patient. Univariable regression models were first conducted to assess the association between each explanatory variable with each outcome. Variables were then simultaneously included in multivariable regression models to estimate adjusted associations. Participants were included in the analysis if they had complete data for the variables used in the model and at least one outcome. All analyses were performed using Stata 19.0. The reporting of this study follows the STROBE guidelines.²⁸

Results

Participants Characteristics

172 (78%) of 221 carers (First Nations and non-Indigenous) were approached to participate in the study (Figure 1). Of these, 165 (96%) carers had complete data for the measures used in the regression analysis and had at least one outcome. Of the carers, 67% were First Nations, 63% were aged 45 years and older, 77% were female, 64% were in a relationship, 56% were currently not working, and 26% self-reported having an anxiety and/or depression diagnosis (Table 1).

Figure 1.

Participant flow diagram

Comparison of First Nations and Non-indigenous Carers

First Nations (n=111) and non-Indigenous (n= 54) carers differed by age, marital status, relationship to patient and the remoteness of their residence (Table 1). 46% of First Nations carers were under 45 years of age compared to 19% of non-Indigenous carers. Around half of First Nations carers were in a relationship (partner/de facto/married) compared to 89% of non-Indigenous carers. Three quarters of non-Indigenous carers were carers for their wife/husband/partner compared to only 16% of First Nations carers. 19% of First Nations carers were living in metropolitan, and 69% in regional areas compared to 43%, and 50% of non-Indigenous carers. First Nations and non-Indigenous carers were comparable for sex, level of education, employment status, number of medical conditions, anxiety and/or depression, and living in a disadvantage area.

Carer Distress, Burden, and QoL

Overall, 43% of carers of First Nations patients with cancer reported having high distress (95%CI: 36%-51%, Table 2), 44% significant caregiver burden (95%CI: 37%-52%) with an average carer QoL of 9.7 (95%CI: 9.3-10.1). Only the prevalence of high distress differed between First Nations and non-Indigenous carers, with around half of First Nations carers reporting high distress compared to just under a third of non-Indigenous carers (49%, 95%CI: 40%-58%; 31%, 95%CI:20%-45%; p-value=0.032).

Table 2.

Outcomes Overall and by Indigenous Status

Carer outcomes	All				First Nations				Non-indigenous				p-value^¥
Carer outcomes	N	n	%	(95% CI)	N	n	%	(95% CI)	N	n	%	(95% CI)	p-value^¥
High distress⁺	164	71	43	(36-51)	110	54	49	(40-58)	54	17	31	(20-45)	0.032
Significant Carer Burden^#	165	73	44	(37-52)	111	51	46	(37-55)	54	22	41	(28-55)	0.528
Carer quality of life^& (mean, SE)	165	9.7	0.2	(9.3-10.1)	111	9.5	0.3	(9.0-10.1)	54	10.1	0.3	(9.4-10.7)	0.262

+Distress thermometer (on a scale of 0-10): low distress score<4, high distress score ≥4.

#6-item Zarit Burden Interview (ZBI-6, on a scale of 0-24): low caregiver burden <6, significant caregiver burden ≥6.

&CarerQol-7D on a scale of 0 (low QoL) to 14 (high QoL).

¥p-value from an unpaired t-test.

When we looked at the association between the carers’ characteristics with carer distress, burden, and QoL similar associations were seen when the measures were fit separately and jointly (Tables 3-5). In the adjusted model, carers who had anxiety and/or depression were 3 times more likely to be distressed (OR=3.28, 95%CI: 1.47 to 7.32, p-value=0.0037, Table 3), 3 and half times more likely to have carer burden (OR=3.51, 95%CI: 1.55 to 7.93, p-value=0.0025, Table 4), and to have lower QoL scores (β=-1.5, 95%CI: -2.6 to -0.42, p-value=0.0070, Table 5) compared to those without anxiety or depression. Only one other association was found, after adjustment, carers looking after their partner had lower QoL score (β=-1.0, 95%CI: -2.1 to 0.0025, p-value=0.051).

Table 3.

Associations Between Sociodemographic and Clinical Characteristics of all Carers With Psychological distress⁺ (n=164)

Measure	Fitted separately			Fitted jointly
Measure	OR	(95% CI)	p-value^§	OR	(95% CI)	p-value^§
C arer details
Age group
<45 years	1.81	(0.95 to 3.44)	0.070	1.92	(0.93 to 3.96)	0.077
≥45	1			1
Sex
Female	1			1
Male	0.94	(0.45 to 1.96)	0.867	1.11	(0.50 to 2.48)	0.789
Marital status
Partner/de facto/married	1			1
Single/widowed/separated/divorced	1.39	(0.74 to 2.64)	0.307	1.45	(0.65 to 3.23)	0.358
Relationship to patient
Family member/friend/other	1			1
Wife/husband/partner	0.85	(0.44 to 1.62)	0.614	1.18	(0.51 to 2.73)	0.699
Medical conditions^#
None or one condition	1			1
Two or more conditions	1.44	(0.75 to 2.75)	0.274	1.18	(0.54 to 2.56)	0.680
Clinically diagnosed anxiety/depression
No	1			1
Yes	3.39	(1.63 to 7.04)	0.0011	3.28	(1.47 to 7.32)	0.0037
Remoteness of residence^¥
Metropolitan areas	1.07	(0.53 to 2.19)	0.769^	1.14	(0.54 to 2.44)	0.875^
Regional	1			1
Remote	0.70	(0.24 to 2.05)		0.84	(0.29 to 2.44)
Living in a disadvantaged area^&
No	1			1
Yes	1.04	(0.56 to 1.94)	0.900	1.04	(0.54 to 2.02)	0.907

+Distress thermometer (on a scale of 0-10): low distress score<4, high distress score ≥4.

#Diagnosed medical conditions: arthritis, asthma, cancer, diabetes, heart disease, high blood pressure, kidney disease, neurological condition, other (excluding anxiety/depression).

¥Modified Monash Model (MMM) of remoteness.

§p-value from Wald Chi-Squared Test.

^Joint test of statistical significance.

Table 4.

Associations Between Sociodemographic and Clinical Characteristics of all Carers With Carer Burden⁺ (n=165)

Measure	Fitted separately			Fitted jointly
Measure	OR	(95% CI)	p-value^§	OR	(95% CI)	p-value^§
C arer details
Age group
<45 years	1.00	(0.53 to 1.90)	0.997	1.00	(0.48 to 2.09)	0.998
≥45	1			1
Sex
Female	1			1
Male	0.58	(0.27 to 1.24)	0.160	0.63	(0.29 to 1.38)	0.248
Marital status
Partner/de facto/married	1			1
Single/widowed/separated/divorced	0.91	(0.48 to 1.72)	0.779	1.04	(0.47 to 2.32)	0.916
Relationship to patient
Family member/friend/other	1			1
Wife/husband/partner	1.22	(0.64 to 2.33)	0.536	1.42	(0.62 to 3.23)	0.403
Medical conditions^#
None or one condition	1			1
Two or more conditions	1.35	(0.71 to 2.58)	0.361	0.78	(0.35 to 1.70)	0.528
Clinically diagnosed anxiety/depression
No	1			1
Yes	3.19	(1.54 to 6.62)	0.0018	3.51	(1.55 to 7.93)	0.0025
Remoteness of residence^¥
Metropolitan areas	1.44	(0.71 to 2.92)	0.269^	1.41	(0.67 to 2.99)	0.439^
Regional	1			1
Remote	0.55	(0.18 to 1.67)		0.67	(0.22 to 2.04)
Living in a disadvantaged area^&
No	1			1
Yes	0.72	(0.39 to 1.34)	0.300	0.64	(0.32 to 1.25)	0.189

+6-item Zarit Burden Interview (ZBI-6, on a scale of 0-24): low caregiver burden<6, significant caregiver burden≥6.

#Diagnosed medical conditions: arthritis, asthma, cancer, diabetes, heart disease, high blood pressure, kidney disease, neurological condition, other (excluding anxiety/depression).

¥Modified Monash Model (MMM) of remoteness.

§p-value from Wald Chi-Squared Test.

^Joint test of statistical significance.

Table 5.

Associations Between Sociodemographic and Clinical Characteristics of all Carers With QoL⁺ (n=165)

Measure	Fitted separately			Fitted jointly
Measure	β	(95% CI)	p-value^§	β	(95% CI)	p-value^§
C arer details
Age group
<45 years	-0.083	(-1.0 to 0.81)	0.855	-0.28	(-1.2 to 0.69)	0.573
≥45
Sex
Female
Male	0.11	(-0.88 to 1.1)	0.833	-0.070	(-1.0 to 0.90)	0.887
Marital status
Partner/de facto/married
Single/widowed/separated/divorced	0.0052	(-0.92 to 0.93)	0.991	-0.50	(-1.6 to 0.63)	0.383
Relationship to patient
Family member/friend/other
Wife/husband/partner	-0.68	(-1.5 to 0.17)	0.115	-1.0	(-2.1 to 0.0025)	0.051
Medical conditions^#
None or one condition
Two or more conditions	-0.81	(-1.7 to 0.10)	0.080	-0.19	(-1.3 to 0.88)	0.729
Clinically diagnosed anxiety/depression
No
Yes	-1.6	(-2.6 to -0.50)	0.0040	-1.5	(-2.6 to -0.42)	0.0070
Remoteness of residence^¥
Metropolitan areas	-0.25	(-1.2 to 0.71)	0.253^	-0.12	(-1.1 to 0.83)	0.696^
Regional
Remote	0.91	(-0.37 to 2.2)		0.48	(-0.82 to 1.8)
Living in a disadvantaged area^&
No
Yes	0.30	(-0.56 to 1.2)	0.490	0.44	(-0.39 to 1.3)	0.293

+CarerQol-7D on a scale of 0 (low QoL) to 14 (high QoL).

#Diagnosed medical conditions: arthritis, asthma, cancer, diabetes, heart disease, high blood pressure, kidney disease, neurological condition, other (excluding anxiety/depression).

¥Modified Monash Model (MMM) of remoteness.

&SEIFA Index of Relative Socio-economic Advantage and Disadvantage: people living in postcodes with a disadvantaged score ≤2nd decile were identified as disadvantaged, those with scores >2nd decile were identified as not disadvantaged.

§p-value from Wald Chi-Squared Test.

^Joint test of statistical significance.

When we performed a stratified analysis by Indigenous status, the same associations were seen for First Nations carers (Tables 6-8). For non-Indigenous carers (Supplemental Tables 2a, 2b & 2c), the association between anxiety and depression was only seen for carer burden, and lower QoL score was seen for those caring for their partner.

Table 6.

Associations Between Sociodemographic and Clinical Characteristics of First Nations Carers With Psychological distress⁺ (n=110)

Measure	Fitted separately			Fitted jointly
Measure	OR	(95% CI)	p-value^§	OR	(95% CI)	p-value^§
C arer details
Age group
<45 years	1.55	(0.72 to 3.30)	0.260	1.71	(0.72 to 4.06)	0.227
≥45	1			1
Sex
Female	1			1
Male	1.05	(0.42 to 2.60)	0.920	1.42	(0.48 to 4.17)	0.522
Marital status
Partner/de facto/married	1			1
Single/widowed/separated/divorced	1.25	(0.59 to 2.64)	0.567	1.41	(0.57 to 3.52)	0.461
Relationship to patient
Family member/friend/other	1			1
Wife/husband/partner	1.36	(0.49 to 3.78)	0.551	1.77	(0.55 to 5.66)	0.334
Medical conditions^#
None or one condition	1			1
Two or more conditions	1.91	(0.84 to 4.33)	0.122	1.14	(0.40 to 3.28)	0.810
Clinically diagnosed anxiety/depression
No	1			1
Yes	3.82	(1.50 to 9.69)	0.0048	3.48	(1.20 to 10.15)	0.022
Remoteness of residence^¥
Metropolitan areas	2.22	(0.80 to 6.15)	0.123^	2.24	(0.75 to 6.67)	0.253^
Regional	1			1
Remote	0.49	(0.14 to 1.75)		0.62	(0.15 to 2.50)
Living in a disadvantaged area^&
No	1			1
Yes	0.99	(0.46 to 2.12)	0.972	1.06	(0.44 to 2.56)	0.900

+Distress thermometer (on a scale of 0-10): low distress score<4, high distress score ≥4.

#Diagnosed medical conditions: arthritis, asthma, cancer, diabetes, heart disease, high blood pressure, kidney disease, neurological condition, other (excluding anxiety/depression).

¥Modified Monash Model (MMM) of remoteness.

§p-value from Wald Chi-Squared Test.

^Joint test of statistical significance.

Table 7.

Associations Between Sociodemographic and Clinical Characteristics of First Nations Carers With Carer Burden⁺ (n=111)

Measure	Fitted separately			Fitted jointly
Measure	OR	(95% CI)	p-value^§	OR	(95% CI)	p-value^§
C arer details
Age group
<45 years	0.70	(0.33 to 1.49)	0.355	0.65	(0.26 to 1.63)	0.360
≥45	1			1
Sex
Female	1			1
Male	0.40	(0.15 to 1.07)	0.069	0.44	(0.15 to 1.26)	0.126
Marital status
Partner/de facto/married	1			1
Single/widowed/separated/divorced	0.97	(0.46 to 2.06)	0.943	0.94	(0.37 to 2.37)	0.896
Relationship to patient
Family member/friend/other	1			1
Wife/husband/partner	1.21	(0.44 to 3.35)	0.708	1.27	(0.42 to 3.90)	0.672
Medical conditions^#
None or one condition	1			1
Two or more conditions	1.38	(0.62 to 3.09)	0.434	0.54	(0.18 to 1.59)	0.264
Clinically diagnosed anxiety/depression
No	1			1
Yes	2.97	(1.22 to 7.22)	0.016	3.88	(1.37 to 10.96)	0.011
Remoteness of residence^¥
Metropolitan areas	1.60	(0.60 to 4.26)	0.334^	1.30	(0.43 to 3.94)	0.737^
Regional	1			1
Remote	0.53	(0.15 to 1.89)		0.66	(0.15 to 2.85)
Living in a disadvantaged area^&
No	1			1
Yes	0.57	(0.26 to 1.24)	0.157	0.53	(0.21 to 1.33)	0.173

+6-item Zarit Burden Interview (ZBI-6, on a scale of 0-24): low caregiver burden <6, significant caregiver burden ≥6.

#Diagnosed medical conditions: arthritis, asthma, cancer, diabetes, heart disease, high blood pressure, kidney disease, neurological condition, other (excluding anxiety/depression).

¥Modified Monash Model (MMM) of remoteness.

§p-value from Wald Chi-Squared Test.

^Joint test of statistical significance.

Table 8.

Associations Between Sociodemographic and Clinical Characteristics of First Nations Carers With QoL⁺ (n=111)

Measure	Fitted separately			Fitted jointly
Measure	β	(95% CI)	p-value^§	β	(95% CI)	p-value^§
C arer details
Age group
<45 years	0.16	(-1.0 to 1.3)	0.772	0.083	(-1.2 to 1.4)	0.897
≥45
Sex
Female
Male	0.32	(-1.0 to 1.7)	0.639	-0.0084	(-1.4 to 1.4)	0.991
Marital status
Partner/de facto/married
Single/widowed/separated/divorced	0.075	(-1.0 to 1.2)	0.894	-0.44	(-1.8 to 0.91)	0.521
Relationship to patient
Family member/friend/other
Wife/husband/partner	-1.4	(-2.8 to -0.12)	0.033	-1.8	(-3.2 to -0.31)	0.018
Medical conditions^#
None or one condition
Two or more conditions	-0.79	(-2.1 to 0.51)	0.233	0.52	(-1.1 to 2.2)	0.533
Clinically diagnosed anxiety/depression
No
Yes	-1.9	(-3.3 to -0.53)	0.0069	-2.1	(-3.6 to -0.61)	0.0062
Remoteness of residence^¥
Metropolitan areas	-0.79	(-2.2 to 0.66)	0.253^	-0.58	(-2.1 to 0.91)	0.703^
Regional
Remote	0.79	(-0.75 to 2.3)		0.17	(-1.6 to 1.9)
Living in a disadvantaged area^&
No
Yes	0.59	(-0.58 to 1.8)	0.320	0.75	(-0.45 to 2.0)	0.217

+CarerQol-7D on a scale of 0 (low QoL) to 14 (high QoL).

#Diagnosed medical conditions: arthritis, asthma, cancer, diabetes, heart disease, high blood pressure, kidney disease, neurological condition, other (excluding anxiety/depression).

¥Modified Monash Model (MMM) of remoteness.

§p-value from Wald Chi-Squared Test.

^Joint test of statistical significance.

Discussion

To our knowledge, this is the first study to quantitatively assess distress, caregiver burden, and QoL among carers of Australian First Nations cancer patients, and to examine factors associated with these outcomes. In this study, 43% of carers reported high distress, 44% experienced significant caregiver burden, and the average QoL score was 9.7. Multiple factors, including sociodemographic characteristics, employment, remoteness, and number of medical conditions, were assessed for associations with these outcomes. Carers with anxiety or depression were more likely to report distress, higher caregiver burden, and lower QoL, and carers providing care for a partner/spouse had lower QoL. This suggests that, for First Nations carers, mental health—specifically anxiety and depression—plays a central role in their distress, caregiver burden, and QoL, whereas other sociodemographic or health-related characteristics appear less influential.

In our study, carers with anxiety or depression were more likely to report distress, caregiver burden, and lower QoL. These associations with anxiety and depression were observed both in the overall carer sample and specifically among First Nations carers, highlighting the consistent impact of mental health on carer outcomes Anxiety and depression have previously been described as key factors associated with the wellbeing of carers, particularly among female carers,^29,30 and are associated with unmet needs and poorer psychological outcomes and wellbeing.^26,30 A 2012 review have confirmed the relationship between carer distress and anxiety and depression.²⁹ Anxiety, depression, and other mental health conditions have been previously recognised as a support need among carers of First Nations Australians with cancer.³¹ Our findings indicate that anxiety and depression are key contributors to the wellbeing of carers of First Nations cancer patients. Support services should therefore prioritise mental health, including routine screening for distress, anxiety, and depression, and access to culturally appropriate psychological support. Integrating carer-focused support within cancer care services and community-based programs may help address the high levels of distress and burden identified in this study.

While anxiety and depression were strongly associated with carer outcomes in our study, other factors typically linked to carer distress, burden and QoL were not significant among carers of First Nations people with cancer.^2,16 Although caring for a partner showed a marginal association with lower QoL, no other sociodemographic or health-related factors were associated with the outcomes. This may partly reflect limitations of the instruments used in this study. Distress was assessed over the past week to capture current psychological wellbeing, which may be influenced by both ongoing caregiving and prior caregiving experiences within the preceding two years. For example, the Distress Thermometer (DT) has demonstrated limitations in capturing distress in this population, as previous research by Garvey et al. similarly observed lower than expected levels of clinically significant distress reported among the First Nations using the DT, and raised questions on its validity in this context.²² Notable concerns with the DT include its simplicity not permitting a more accurate representation of the issues which lead to distress, and respondent confusion related to the definition of the concept of ‘distress’.³² Additionally, the established cutoff score of four may not be optimal, with recent revisions suggesting a reduced cutoff score of three for assessing distress levels within one month of cancer diagnosis.^22,33,34

The measures of wellbeing observed in this study are constructed with values aligned with Western biomedical framework and may not fully capture Indigenous concept of wellbeing, which encompass the physical, cultural, spiritual, and social constructs being represented, alongside connection with land or Country.³⁵ A recent systematic review of quality-of-life measures among Indigenous people globally identified that though there are some measures which have demonstrated validity in this population, few had been adequately translated into the local Indigenous context.³⁶ The review suggested that Western measures for wellbeing may be used in Indigenous populations, but should be interpreted with caution due to the absence of relevant domains.³⁶

Our findings highlight the need for the development of a culturally appropriate tool to assess the wellbeing and unmet needs of carers of First Nations patients. First Nations Australians are a population with distinct cultural needs which must be considered when measuring wellbeing. Existing measures that meet the specific needs of First Nations people and their carers is limited.³⁷ Future measures should be developed using codesign principles in collaboration with First Nations communities and carers, ensuring that the domains and constructs reflect culturally relevant aspects of wellbeing, including physical, emotional, social, and spiritual dimensions.

Although the high number of First Nations carers included in this study may provide some information on wellbeing outcomes, the low number of non-First Nations caregivers may limit the generalisability of the findings. Our study reports analyses of survey data collected prospectively from eligible participants within the SOCS project, and power calculations were not performed prior to analysis. The sample size for some subgroups may have been insufficient to detect significant associations for certain sociodemographic and health-related factors. Consequently, the non-significant findings for some predictors may reflect limited statistical power rather than a true absence of association. All demographic and health-related information was self-reported, which may be subject to recall bias or misclassification. The timing of diagnosis of anxiety and/or depression relative to the caregiving role, as well as treatment status, was not available, limiting interpretation of temporal relationships. Our study did not assess the influence of being responsible for providing care for more than one person, which may be a limitation. Family and community are a key component of wellbeing for First Nations people, with many carers of First Nations people also providing care for others with illness or disability. It has been suggested that the strong community and family values may present an opportunity for sharing the burden of care with others, although hesitancy to seek support due to silence on cancer may be a barrier.^5,6,38

Conclusion

Informal carers of First Nations cancer patients play a crucial role in supporting their loved ones, but caregiving may negatively affect their wellbeing. In this study, carers with anxiety or depression were more likely to report higher level of distress, greater carer burden, and lower QoL. QoL was reported to be lower among those who were providing care for their partners. No other factors examined were significantly associated with wellbeing outcomes. They highlight the need for culturally tailored measures, developed in collaboration with First Nations communities and carers to more accurately reflect the carer’s wellbeing and guide the development of appropriate support services.

Supplemental Material

Supplemental material - Psychological Distress, Caregiver Burden and Quality of Life Among Informal Carers of First Nations Australians Diagnosed With Cancer: A Cross-Sectional Study

Supplemental material for Psychological Distress, Caregiver Burden and Quality of Life Among Informal Carers of First Nations Australians Diagnosed With Cancer: A Cross-Sectional Study by Idin Panahi, Helena Romaniuk, Shafkat Jahan, Kenneth Carter, Jacinta Elston, Gail Garvey in Cancer Control

Footnotes

Acknowledgments

We acknowledge Rachael Jaenke, who provided project management and support for this project. We also gratefully acknowledge the study site coordinators at the Princess Alexandra Hospital, Royal Brisbane and Women’s Hospital, Ipswich Hospital, Bundaberg Hospital, Townsville University Hospital, and Cairns Hospital for their support with participant recruitment. We also acknowledge the extended SOCS research team who supported the project through participant recruitment, data collection, and data management.

ORCID iDs

Idin Panahi

Helena Romaniuk

Shafkat Jahan

Kenneth Carter

Gail Garvey

Ethical Considerations

This study was undertaken in accordance with the NHMRC Guidelines for the ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities and in accordance with the Declaration of Helsinki (revised 2024). Ethics approval was received from the following Committees: the Northern Territory Department of Health and Menzies School of Health Research HREC (NTHREC; HREC ID: 2020-3790; 9^th September 2020); The University of Queensland, HREC (UQ HREC; 2021/HE002242; 30^th September 2021); and the Metro South Hospital and Health Service HREC (MSHHS; HREC/2020/QMS/65533; 10^th December 2020) which covered the approved study sites.

Consent to Participate

Informed written or verbal consent (depending on in-person or phone call survey) was obtained from all participants included in the study.

Author Contributions

• Conceptualisation: GG, HR.

• Methodology: KC, HR, SJ, GG.

• Data curation: HR, KC.

• Formal analysis: HR.

• Writing- original draft: IP, HR, SJ, KC.

• Writing- review & editing: IP, HR, SJ, KC, JE, GG.

• Supervision: GG, JE.

• Funding acquisition: GG.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by the Australian Research Council (ARC) Discovery Indigenous Scheme, under the project title: Assessing supportive care needs of Indigenous cancer survivors’ caregivers (Project ID: IN180100047) and a National Health and Medical Research Council (NHMRC) Centre of Research Excellence in Targeted Approaches To Improve Cancer Services for Aboriginal and Torres Strait Islander Australians (TACTICS; GNT1153027). GG was supported by an NHMRC Investigator grant (GNT2034453).

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

The data underlying this article is not available due to ethical and privacy restrictions.*

Supplemental Material

Supplemental material for this article is available online.

References

Australian Institute of Health and Welfare . Informal carers. 2025. Updated October 30, 2025. Accessed April 7, 2026.https://www.aihw.gov.au/reports/australias-welfare/informal-carers

Molassiotis

Wang

. Understanding and Supporting Informal Cancer Caregivers. Current Treatment Options in Oncology. 2022;23(4):494-513. doi:10.1007/s11864-022-00955-3.

Girgis

Lambert

Johnson

Waller

Currow

. Physical, Psychosocial, Relationship, and Economic Burden of Caring for People With Cancer: A Review. Journal of Oncology Practice. 2013;9(4):197-202. doi:10.1200/jop.2012.000690.

Goodwin

Crawford-Williams

Ireland

, et al. The quality of life of regional and remote cancer caregivers in Australia. European Journal of Cancer Care. 2022;31(4):e13587. doi:10.1111/ecc.13587.

Masa

Martinez-Bredeck

Butler

, et al. The experiences of caregivers of Indigenous cancer survivors in Australia, Canada, New Zealand, and the United States: a systematic review. Journal of Psychosocial Oncology Research and Practice. 2020;2(4):e040.

Hokanson

Quinn

Schüz

de Salas

Scott

. A systematic review of Indigenous caregiver functioning and interventions. Quality of life research. 2018;27(8):2007-2017. doi:10.1007/s11136-018-1836-1.

Garvey

Indigenous and Tribal Peoples and Cancer. 1st ed. ed. Cham, Switzerland: Springer Nature Switzerland; 2024.

Australian Institute of Health and Welfare . Cancer in Australia 2021. 2021. Updated August 18, 2023. https://www.aihw.gov.au/reports/cancer/cancer-in-australia-2021. Accessed 7 April 2026.

Belachew

Jahan

, et al. Radiotherapy and time to initial treatment following a cancer diagnosis among First Nations Australians: results from a population-based analysis. Arch Public Health. 2025;83(1):142. doi:10.1186/s13690-025-01638-9.

10.

Australian Institute of Health and Welfare . Profile of First Nations people. 2025. Updated October 16, 2025. Accessed April 7, 2026.https://www.aihw.gov.au/reports/australias-welfare/profile-of-indigenous-australians

11.

Mosher

Adams

Helft

, et al. Positive changes among patients with advanced colorectal cancer and their family caregivers: a qualitative analysis. Psychol Health. 2017;32(1):94-109. doi:10.1080/08870446.2016.1247839.

12.

Von Ah

Spath

Nielsen

Fife

. The Caregiver’s Role Across the Bone Marrow Transplantation Trajectory. Cancer Nursing. 2016;39(1):E12-E19.

13.

Shilling

Starkings

Jenkins

Cella

Fallowfield

. Development and validation of the caregiver roles and responsibilities scale in cancer caregivers. Quality of Life Research. 2019;28(6):1655-1668. doi:10.1007/s11136-019-02154-4.

14.

Wall

Signal

Cooper

, et al. Supportive care needs and assessment tools for family caregivers of Indigenous people with cancer: a narrative review. Supportive Care in Cancer. 2025;33(12):1119. doi:10.1007/s00520-025-10115-6.

15.

Zhao

, et al. Psychometric validation and cultural adaptation of the Chinese version of the CarerQol-7D instrument. Health and Quality of Life Outcomes. 2025;23(1):49. doi:10.1186/s12955-025-02379-7.

16.

Alam

Hannon

Zimmermann

. Palliative Care for Family Caregivers. Journal of Clinical Oncology. 2020;38(9):926-936. doi:10.1200/jco.19.00018.

17.

World Medical Association . World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. Jama. 2013;310(20):2191-2194. doi:10.1001/jama.2013.281053.

18.

Australian Government . Modified Monash Model. 2025. https://www.health.gov.au/topics/rural-health-workforce/classifications/mmm. Accessed 7 April 2026.Updated April 10, 2025.

19.

Australian Bureau of Statistics . Socio-Economic Indexes for Areas (SEIFA). Australia: ABS; 2023. https://www.abs.gov.au/statistics/people/people-and-communities/socio-economic-indexes-areas-seifa-australia/latest-release. Accessed 7 April 2026.Updated October 6, 2023.

20.

National Comprehensive Cancer Network . NCCN Guidelines Version 1.2025 Distress Management. Updated January 14, 2026. https://www.nccn.org/docs/default-source/patient-resources/nccn_distress_thermometer.pdf. Accessed 7 April 2026.

21.

Zhang

Zhong

, et al. The diagnostic role of a short screening tool—the distress thermometer: a meta-analysis. Supportive Care in Cancer. 2014;22(7):1741-1755. doi:10.1007/s00520-014-2143-1.

22.

Garvey

Cunningham

Janda

Yf He

Valery

. Psychological distress among Indigenous Australian cancer survivors. Supportive Care in Cancer. 2018;26(6):1737-1746. doi:10.1007/s00520-017-3995-y.

23.

Head

Schapmire

Keeney

, et al. Use of the Distress Thermometer to discern clinically relevant quality of life differences in women with breast cancer. Quality of Life Research. 2012;21(2):215-223. doi:10.1007/s11136-011-9934-3.

24.

Higginson

Gao

Jackson

Murray

Harding

. Short-form Zarit Caregiver Burden Interviews were valid in advanced conditions. Journal of Clinical Epidemiology. 2010;63(5):535-542. doi:10.1016/j.jclinepi.2009.06.014.

25.

Brouwer

WBF

van Exel

NJA

van Gorp

Redekop

. The CarerQol instrument: A new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Quality of Life Research. 2006;15(6):1005-1021. doi:10.1007/s11136-005-5994-6.

26.

Hoefman

Al-Janabi

McCaffrey

Currow

Ratcliffe

. Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations. Quality of life research. 2015;24(5):1255-1273. doi:10.1007/s11136-014-0848-8.

27.

Lutomski

van Exel

NJA

Kempen

GIJM

, et al. Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS). Quality of Life Research. 2015;24(5):1281-1293.

28.

von Elm

Altman

Egger

Pocock

Gøtzsche

Vandenbroucke

STROBE Initiative . The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. The Lancet (British edition). 2007;370(9596):1453-1457. doi:10.1016/S0140-6736(07)61602-X.

29.

Lambert

Harrison

Smith

, et al. The unmet needs of partners and caregivers of adults diagnosed with cancer: a systematic review. BMJ Supportive & Palliative Care. 2012;2(3):224-230. doi:10.1136/bmjspcare-2012-000226.

30.

Friðriksdóttir

Sævarsdóttir

Halfdánardóttir

SÍ

, et al. Family members of cancer patients: Needs, quality of life and symptoms of anxiety and depression. Acta Oncologica. 2011;50(2):252-258. doi:10.3109/0284186X.2010.529821.

31.

Bell

Anderson

Girgis

, et al. “We Have to Be Strong Ourselves”: Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer. Int J Environ Res Public Health. 2021;18(14):7281. doi:10.3390/ijerph18147281.

32.

Gessler

Low

Daniells

, et al. Screening for distress in cancer patients: is the distress thermometer a valid measure in the UK and does it measure change over time? A prospective validation study. Psychooncology. 2008;17(6):538-547. doi:10.1002/pon.1273.

33.

Ownby

. Use of the Distress Thermometer in Clinical Practice. J Adv Pract Oncol. 2019;10(2):175-179.

34.

Cutillo

O’Hea

Person

Lessard

Harralson

Boudreaux

. The Distress Thermometer: Cutoff Points and Clinical Use. Oncology nursing forum. 2017;44(3):329-336. doi:10.1188/17.ONF.329-336.

35.

Howard

Anderson

Cunningham

, et al. What Matters 2 Adults: a study protocol to develop a new preference-based wellbeing measure with Aboriginal and Torres Strait Islander adults (WM2Adults). BMC Public Health. 2020;20(1):1739. doi:10.1186/s12889-020-09821-z.

36.

Roy

Neill

Swampy

, et al. Preference-based measures of health-related quality of life in Indigenous people: a systematic review. Quality of Life Research. 2024;33(2):317-333. doi:10.1007/s11136-023-03499-7.

37.

Howard

Garvey

Anderson

, et al. Development of the What Matters 2 Adults (WM2A) wellbeing measure for Aboriginal and Torres Strait Islander adults. Social Science & Medicine. 2024;347:116694. doi:10.1016/j.socscimed.2024.116694.

38.

Meiklejohn

Arley

Pratt

Valery

Bernardes

. We just don’t talk about it': Aboriginal and Torres Strait Islander peoples' perceptions of cancer in regional Queensland. Rural and remote health. 2019;19(2):4789. doi:10.22605/RRH4789.

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