Self-compassion and self-coldness and their relationship with psychological distress and subjective well-being among community-based Hazaras in Australia.

Hazaras are a newly emerging community in Australia and limited research has explored their mental health. The first aim of this study was to explore levels of psychological distress and subjective well-being reported by Hazaras in Australia, and whether scores on psychosocial variables (self-compassion, self-coldness, acculturation, resilience, spirituality), psychological distress and domains of subjective well-being differed by sociodemographic groups. The second aim had two parts: (a) to examine bivariate relationships between the psychosocial variables, psychological distress and subjective well-being; and (b) to examine whether the psychosocial predictor variables independently contributed to subjective well-being and psychological distress when controlling for sociodemographic characteristics. Seventy-two Hazaras (58 men and 14 women), with a mean age of 28.82 years (SD = 8.84) and average length of time residing in Australia of 10.17 years (SD = 4.11), completed an online survey. There were sociodemographic differences in relation to key variables of interest; for example, participants who did not have family members in Australia reported lower levels of global life satisfaction. Moderate negative relationships were found between self-compassion and psychological distress and between self-coldness and subjective well-being. Self-coldness, self-compassion, resilience and acculturation contributed uniquely to psychological distress and subjective well-being when controlling for sociodemographic variables. Although migration programmes that provide permanent residency and allow family members to join refugees in Australia are limited, they appear important. Many of the difficulties facing Hazaras are ongoing, external and beyond their control (e.g. visa status); however, there is a possibility that self-compassion can play a role as a protective factor.

'My body is out to wreck everything I have': a qualitative study of how women with endometriosis feel about their bodies.

OBJECTIVE: There is a distinct lack of research regarding the relationship with the body in women with endometriosis, despite the condition involving significant changes to appearance and impaired bodily functionality. The current study aimed to understand how women with endometriosis feel about their body. METHODS AND MEASURES: Participants completed an online survey with open-ended questions on how they feel about their body, physical appearance, and level of daily functioning. RESULTS: Responses from 315 women with endometriosis were analysed using reflexive thematic analysis, generating three themes: 1) 'It makes me feel broken and inadequate' (Sense of being defective); 2) 'I feel like I'm in a war with it' (Sense of conflict); and 3) 'I feel like my body isn't mine; it's out of control' (Sense of alienation). CONCLUSION: The findings provide support for the notion that the relationship between the body and sense of self is particularly problematic for women with endometriosis and warrants therapeutic intervention. Future research should verify the efficacy of appreciation and self-compassion-based interventions for people with endometriosis.

Endometriosis Symptomatology, Dyspareunia, and Sexual Distress Are Related to Avoidance of Sex and Negative Impacts on the Sex Lives of Women with Endometriosis.

BACKGROUND: Endometriosis affects approximately 10% of women and is associated with a range of symptoms including pelvic pain, abnormal bleeding, and painful sexual intercourse. However, very little is known about the relationship between endometriosis-related symptoms and sex. METHODS: Women with a diagnosis of endometriosis (n = 2060; mean age = 30 years) completed a questionnaire measuring the frequency of endometriosis symptoms, dyspareunia, sexual distress, avoidance of sex, and the perceived negative impact of endometriosis symptoms on sex life. RESULTS: In bivariate and multivariate logistic regression models with avoidance of sex and perceived negative impact of endometriosis symptoms on sex life as DVs, higher endometriosis symptom frequency, dyspareunia, and sexual distress were associated with greater avoidance of sex and higher perceived negative impact of endometriosis symptoms on sex life. With a two- and three-fold increase in the odds of avoiding sex and reporting a negative impact of endometriosis on sex lives, respectively, for each point increase in dyspareunia. Similarly, there was a 7% to 11% increase in avoidance of sex and the negative impact of endometriosis on sex lives, per one-point increase in symptom frequency and sexual distress. CONCLUSIONS: The results highlight the considerable impacts of endometriosis symptomatology on women's sex lives and wellbeing. Better medical and counselling services may be needed to ameliorate the negative impact of endometriosis on women's sex lives.

You need the more relaxed side, but you also need the adrenaline: promoting physical health as perceived by youth with vision impairment.

Purpose: Within a larger investigation of their conceptualizations of wellbeing, this article explores elements of physical health discussed by youth with vision impairment (VI) to inform physical health programs, with youths' personal motivation to be physically active previously identified as key to participation.Methods: Twenty-one youth (aged 12-25) participated. The qualitative data discussed was collected for each participant across three interviews/focus groups and audio-recording tasks in a project regarding their conceptualizations of wellbeing.Results: Thematic analysis identified an understanding of physical health characterized by four subthemes. First, participants' bodily health and fitness produced positive self-perceptions, but also held greater importance given the increased physical risks of living with VI. Second, energy-a positive, motivating feeling-held additional salience given extra demands upon participants related to their VIs. Thus, relaxation strategies (e.g., reading) were essential to meet these demands and recover from injury/pain (bodily health). Meanwhile, physical activity promoted fitness and vitality. Specific activities also entailed freedom of movement, contrasting heightened environmental risks in other settings.Conclusions: To better align with possible participation motivators, participants' discussions suggested that programs should target relaxation and energy in youth with VI-alongside physical activity-and offer free and safe movement in space.Implications for RehabilitationYouth with vision impairment consider feelings of energy important to their physical health, alongside their bodily health and fitness.Physical health programs for youth with vision impairment should target both physical activity and relaxation.Youth with vision impairment report greater physical and social threats to their bodily safety in considering their bodily health.Physical health programs for youth with vision impairment should provide an opportunity for free movement in space to balance these lived physical risks.

A conceptual map of health-related quality of life dimensions: key lessons for a new instrument.

PURPOSE: Quality-adjusted life years (QALYs) represent a critical metric in economic evaluations impacting key healthcare decisions in many countries. However, there is widespread disagreement as to which is the best of the health state utility (HSU) instruments that are designed to measure the Q in the QALY. Instruments differ in their descriptive systems as well as their valuation methodologies; that is, they simply measure different things. We propose a visual framework that can be utilized to make meaningful comparisons across HSU instruments. METHODS: The framework expands on existing HRQoL models, by incorporating four distinctive continua, and by putting HRQoL within the broader notion of subjective well-being (SWB). Using this conceptual map, we locate the five most widely used HSU-instruments (EQ-5D, SF-6D, HUI, 15D, AQoL). RESULTS: By individually mapping dimensions onto this visual framework, we provide a clear picture of the significant conceptual and operational differences between instruments. Moreover, the conceptual map demonstrates the varying extent to which each instrument moves outside the traditional biomedical focus of physical health, to also incorporate indicators of mental health and social well-being. CONCLUSION: Our visual comparison provides useful insights to assess the suitability of different instruments for particular purposes. Following on from this comparative analyses, we extract some important lessons for a new instrument that cover the domains of physical, mental and social aspects of health, i.e. it is in alignment with the seminal 1948 WHO definition of health.

The relationship between endometriosis-related pelvic pain and symptom frequency, and subjective wellbeing.

BACKGROUND: This exploratory study sought to establish the relationship between endometriosis-related pelvic pain, endometriosis symptom-frequency, and women's subjective wellbeing (SWB). METHODS: A purposive sample (N = 2061) of women with endometriosis aged between 18 and 62 years (M = 30.49 ± 7.45) completed an online questionnaire containing a measure of pelvic pain (Biberoglu & Behrman Scale; B&B), endometriosis symptom frequency, and an established measure of SWB (Personal Wellbeing Index: PWI). RESULTS: Mean SWB total scores (58.35 ± 17.90) were considerably lower than those of women in the general population (western normative range = 70-80; mean = 76). On average, women reported moderate levels of pelvic pain (B&B mean = 5.96 ± 1.84), with a mean of 10.87 (± 4.81) endometriosis-related symptoms across the sample. Significant relationships were found between pelvic pain and SWB dimension and total scores (r's = - 0.20 to - 0.43, all p's < .001), and significant small to medium associations between symptom frequency and all but one of the dimensions of SWB (r's = - 0.12 to - 0.23, all p's < .007). In multivariate regression models accounting for age and delay in diagnosis, higher levels of pelvic pain were significantly associated with lower SWB scores across all eight dimensions of the PWI and total score (all p's < .002). Greater symptom frequency was significantly associated with lower levels of SWB for the dimensions of health, future security, life as a whole, and total scores (all p's < .002). CONCLUSIONS: SWB was lower in women with endometriosis than SWB in women from the general population, and endometriosis related symptoms and pelvic pain explain significant proportions of the unique variance in women's SWB scores. Psychosocial support is needed for women dealing with endometriosis-related symptoms and pain in order to improve their wellbeing and quality of life.

Examining subjective wellbeing and health-related quality of life in women with endometriosis.

The purpose of this study was to explore the subjective wellbeing, health-related quality of life and lived experience of women living with endometriosis. In 2015 five hundred participants between the ages of 18-63 (M = 30.5, SD = 7.46) were recruited through Endometriosis Australia and social media, completing an online questionnaire comprising the Personal Wellbeing Index, the Endometriosis Health Profile-30 and various open-ended questions. Results found that women with endometriosis reported low levels of subjective wellbeing (mean PWI total scores of 51.5 ± 2.03), considerably below the normative range of 70-80 for western populations. The mean Endometriosis Health Profile total score indicated a very low health-related quality of life amongst the women in this sample (78.9, ±13.14). There was also a significant relationship between scores on the Endometriosis Health Profile and Personal Wellbeing Index. The findings from the qualitative data suggest that endometriosis impacts negatively on women's lives in several areas such as; social life, relationships and future plans, this in turn affects women's overall life quality. The study highlights the strong negative impact that endometriosis can have on women's subjective wellbeing and health related quality of life, contributing to productivity issues, relationship difficulties and social dissatisfaction and increasing the risk of psychological comorbidities.

Rasch analysis of the Personal Wellbeing Index.

PURPOSE: The Personal Wellbeing Index (PWI) is used internationally to measure subjective well-being. While numerous studies have reported on the psychometric properties of the PWI using classic test theory, the current paper provides additional psychometric evaluation using the Rasch measurement model. METHOD: The responses to the PWI items of 593 healthy adults living in Australia or Canada were analysed using Rasch analysis. Assessed were overall model fit was assessed, individual person fit and item fit, reliability, differential item functioning (DIF), unidimensionality, targeting, and response format. RESULTS: Results indicate excellent psychometric properties of the PWI, provided the religion/spirituality item is excluded. The seven-item PWI showed good model fit (overall item-trait interaction χ (2) = 70.59, df = 63, p = 0.24), excellent person separation (PSI = .89), no item or person misfit, and no DIF for country or gender, and unidimensionality was supported. In addition, only very mild disordered thresholds were observed for the 'safety' item, indicating that overall, the 11-point response format was suitable for this population. CONCLUSION: It is recommended that the religion/spirituality item not be included in the aggregated or averaged total score in Western context and that caution should be used in comparison across different groups where the eight-item version has been used.

Subjective wellbeing and 'felt' stigma when living with HIV.

PURPOSE: The impact of stigma on subjective wellbeing was explored in adults living with HIV in Australia and the USA. It was hypothesised that this population would report poorer subjective wellbeing than the general population and that 'felt' stigma would contribute significantly to reported levels of subjective wellbeing. METHODS: A total of 274 participants were recruited through Australian AIDS councils and HIV-specific online support groups. Participants completed a composite questionnaire comprising the personal wellbeing index­adult (PWI-A), the HIV version of the unsupportive social interactions inventory (USII) and demographic and health-related items. The PWI-A total score was used to form a personal wellbeing index, ranging from 0 to 100. RESULTS: Participants reported mean PWI-A total scores of 54.7, considerably below the normative range of 70­80 for Western populations. There was a strong negative correlation between PWI-A total scores and USII total scores with the experience of high levels of unsupportive social interactions being associated with reduced levels of subjective wellbeing. CONCLUSIONS: Our study suggests that despite antidiscrimination legislation, 'felt' stigma in the form of unsupportive social interactions continues to exert a negative impact on subjective wellbeing. Reduced subjective wellbeing may increase the risk of adverse health behaviours, such as medication non-adherence, substance abuse, risky sexual behaviours and non-disclosure of HIV serostatus.

Utility weights for the vision-related Assessment of Quality of Life (AQoL)-7D instrument.

PURPOSE: To obtain utility weights consistent with the needs of economic evaluation for the Assessment of Quality of Life (AQoL)-7D, a generic instrument created to increase the sensitivity of the measurement of quality of life amongst people with impaired vision. METHODS: Two extant instruments were combined, the Vision-related Quality of Life Index (VisQoL) and the AQoL-6D. Utilities were obtained from patients with visual impairment and from the general population using time trade-off (TTO) methodology. Dimensions were combined and an econometric adjustment used to eliminate the effects of instrument redundancy. Bias was tested by comparison of holistic TTO values with utility scores predicted from the AQoL-7D scoring formula. RESULTS: The AQoL-7D instrument consists of 26 items and 7 dimensions each with good psychometric properties. Their combination into a single instrument resulted in significant redundancy which was successfully eliminated. Utility formulae for both the public and patients produced bias-free estimates of the utility of holistic health states describing visual impairment. Results imply differing valuations of health states by the public and by people with impaired vision. CONCLUSIONS: The AQoL-7D can detect changes in health states affecting people with impaired vision which are likely to be overlooked by other generic instruments due to content insensitivity. The utilities it produces are generated using a "mainstream" methodology, the TTO. Quality-adjusted life year values based on the AQoL-7D may therefore be used for economic evaluation of programs.

Measuring the impact and distress of osteoarthritis from the patients' perspective.

BACKGROUND: To assess the internal construct validity of the Perceived Impact of Problem Profile (PIPP), a patient based outcome measure based on the International Classification of Functioning, Disability and Health (ICF), which assesses impact and distress, in an osteoarthritis (OA) cohort. METHODS: A questionnaire comprising the 23-item PIPP, which assesses five domains (mobility, participation, self care, psychological well being and relationships), the Western Ontario McMasters University Osteoarthritis Index (WOMAC), the General Well-Being Index (GWBI), and the Hospital Anxiety and Depression Scale (HADS) was posted to people with clinician diagnosed OA. Assessment of the internal construct validity of the PIPP was undertaken using Rasch analysis performed with RUMM2020 software and concurrent validity through comparator measures. RESULTS: Two hundred and fifty-nine participants with OA responded. Analysis of the five individual domains of the PIPP indicated that there was good fit to the Rasch model, with high person separation reliability. One item required removal from the Mobility subscale and the Participation subscale. There were strong correlations between the PIPP Mobility scores and the WOMAC disability and pain subscales (rho = .73 and rho = .68), and between the PIPP Psychological well-being and HADS Depression (rho = .71) and GWBI (rho = -.69). High inter-correlations between the impact and distress subscales for each domain (range rho = .85 to .96), suggested redundancy of the latter. CONCLUSION: This study demonstrates that the PIPP has good psychometric properties in an OA population. The PIPP, using just the impact subscales, provides a brief, reliable and valid means of assessing the impact of OA from the individual's perspective and operationalizing the bio-psychosocial model by the application of a single multi-domain questionnaire.

Vision and quality of life: development of methods for the VisQoL vision-related utility instrument.

PURPOSE: To describe the methods and innovations used in constructing the VisQoL, a vision-related utility instrument for the health economic evaluation of eye care and rehabilitation programs. METHODS: The VisQoL disaggregates vision into six items. Utilities were estimated for item worst responses (the worst level for each item, with all other items at their best level) and VisQoL all-worst responses (all items at their worst level) using the time trade-off procedure. Time trade-off questions require people to imagine living a fixed number of years with a particular health condition and then indicate how many of those years of life they would be willing to trade to have perfect health. Where respondents indicated a health state was "worse than death" negative utilities were estimated. Time trade-off questions minimized the "focusing effect," which occurs if respondents discount the fact that all other aspects of health are at their best when answering questions, by using pictorial and verbal aids. RESULTS: Item utilities were combined using a multiplicative model, and VisQoL model utilities placed on a scale where 0.00 and 1.00 represent full health and death, respectively. The VisQoL allows utilities to be calculated for a wide range of vision-related conditions. CONCLUSION: The 6-item VisQoL has excellent psychometric properties and is specifically designed to be sensitive to vision-related quality of life. It is the first instrument to permit the rapid estimation of utility values for use in economic evaluations of vision-related programs.

Measuring the impact of health problems among adults with limited mobility in Thailand: further validation of the Perceived Impact of Problem Profile.

BACKGROUND: The Perceived Impact of Problem Profile (PIPP) was developed to provide a tool for measuring the impact of a health condition from the individual's perspective, using the ICF model as a framework. One of the aims of the ICF is to enable the comparison of data across countries, however, relatively little is known about the subjective experience of disability in middle and low-income countries. The aim of this study was to assess the validity of the Perceived Impact of Problem Profile (PIPP) for use among adults with a disability in Thailand using Rasch analysis. METHODS: A total of 210 adults with mobility impairment from the urban, rural and remote areas of northeast Thailand completed the PIPP, which contains 23 items assessing both impact and distress across five key domains (Self-care, Mobility, Participation, Relationships, and Psychological Well-being). Rasch analysis, using RUMM2020, was conducted to assess the internal validity and psychometric properties of the PIPP Impact subscales. Validation of the PIPP Impact scales was conducted by comparing scores across the different response levels of the EQ5D items. RESULTS: Rasch analysis indicated that participants did not clearly differentiate between 'impact' and 'distress,' the two aspects assessed by the PIPP. Further analyses were therefore limited to the PIPP Impact subscales. These showed adequate psychometric properties, demonstrating fit to the Rasch model and good person separation reliability. Preliminary validity testing using the EQ5D items provided support for the PIPP Impact subscales. CONCLUSION: The results provide further support for the psychometric properties of the PIPP Impact scales and indicate that it is a suitable tool for use among adults with a locomotor disability in Thailand. Further research is needed to validate the PIPP across different cultural contexts and health conditions and to assess the usefulness of separate Impact and Distress subscales.

Impact, distress and HRQoL among Malaysian men and women with a mobility impairment.

BACKGROUND: Although non-communicable and chronic disease now accounts for 47% of the global burden of disease, little is known of the everyday experiences and social aspects of disability and disablement in middle and low income countries. This article aims to address this gap by exploring the subjective experience of mobility impairment in Malaysia. Specifically, it examines health-related quality of life and the impact and distress related to impaired mobility, and investigates any gender differences in relation to the experience of disability. METHODS: The data were collected as part of an interdisciplinary, multi-country study known as RESILIENCE (Research into Social Inclusion, Locomotive Impairment and Empowerment through Networking, Collaboration and Education). Cluster sampling was used to administer the EQ-5D and the Perceived Impact of Problems Profile (PIPP) to 210 adults from Selangor state, west coast Peninsular Malaysia. RESULTS: The participants consisted of 94 males and 116 females, aged between 18-90 years (mean 60 years), with the majority being Malay. The majority of participants were also married, from rural areas and had primary education only. Very few participants lived alone. In addition, males were more likely to attribute their impaired mobility to an accident. The majority of participants with mobility impairment experienced a moderate to high level of pain/discomfort (79%) and anxiety/depression (72%), and at least some problems with performing usual activities (71%), as measured by the EQ-5D. In addition, using the Perceived Impact of Problems Profile (PIPP), participants also reported high levels of impact and distress related to participation in community life. In general, males reported higher impact and distress across several items, most significantly in regard to participation in community activities, moving around the neighbourhood, ability to live independently, and ability to assist their family members. CONCLUSION: This paper provides preliminary data regarding the health-related quality of life among Malaysians with impaired mobility, and highlights the multifaceted impact of disability and the importance of acknowledging the diverse cultural contexts in which disability can occur. It also raises questions regarding gender differences in the subjective experience of disability in Malaysia.

Measuring the impact and distress of health problems from the individual's perspective: development of the Perceived Impact of Problem Profile (PIPP).

BACKGROUND: The aim of this study was to develop and conduct preliminary validation of the Perceived Impact of Problem Profile (PIPP). Based on the biopsychosocial model of health and functioning, the PIPP was intended as a generic research and clinical measurement tool to assess the impact and distress of health conditions from the individuals' perspective. The ICF classification system was used to guide the structure of the PIPP with subscales included to assess impact on self-care, mobility, participation, relationships and psychological well-being. While the ICF focuses on the classification of objective health and health related status, the PIPP broadens this focus to address the individuals' subjective experience of their health condition. METHODS: An item pool of 23 items assessing both impact and distress on five key domains was generated. These were administered to 169 adults with mobility impairment. Rasch analysis using RUMM2020 was conducted to assess the psychometric properties of each set of items. Preliminary construct validation of the PIPP was performed using the EQ5D. RESULTS: For both the Impact and Distress scales of the PIPP, the five subscales (Self-care, Mobility, Participation, Relationships, and Psychological Well-being) showed adequate psychometric properties, demonstrating fit to the Rasch model. All subscales showed adequate person separation reliability and no evidence of differential item functioning for sex, age, educational level or rural vs urban residence. Preliminary validity testing using the EQ5D items provided support for the subscales. CONCLUSION: This preliminary study, using a sample of adults with mobility impairment, provides support for the psychometric properties of the PIPP as a potential clinical and research measurement tool. The PIPP provides a brief, but comprehensive means to assess the key ICF components, focusing on the individuals' perspective of the impact and distress caused by their health condition. Further validation of its use across different health conditions and varying cultural settings is required.

Vision and quality of life: the development of a utility measure.

PURPOSE: To identify the content for a vision and quality of life-related utility measure (Vision Quality of Life Index [VisQoL]) for the economic evaluation of eye care and rehabilitation programs. METHODS: Focus groups of the visually impaired elicited key concepts. Based on these and previous research, 33 items were generated. These were administered to visually impaired adults (n = 70) and a representative sample of unimpaired adults (n = 86). The item bank was reduced through examination of item properties, exploratory factor (EFA), item response theory (IRT), and structural equation modeling (SEM) analyses. The resultant model was confirmed through administration to a second sample of participants. RESULTS: Focus group themes included physical well-being, social well-being, independence, self-actualization, emotional well-being, and planning and organization. Poorly performing items were eliminated on basic psychometric properties, including failure to discriminate. Next, EFA loadings were used to select items. Twelve items survived. To minimize redundancy, IRT analysis and SEM reduced the VisQoL item pool to six items (Cronbach alpha = 0.88). To confirm this model, these items were then administered to an additional 218 participants; 35% with a vision impairment. A pooled SEM analysis showed the model to have very good fit properties (root mean square error of approximation [RMSEA] = 0.000). A preliminary test of the model against visual acuity showed a significant monotonic relationship. CONCLUSIONS: The short 6-item VisQoL has excellent psychometric properties as a simple summative instrument. It can be used in its present state as a condition-specific outcome measure for the evaluation of healthcare interventions for the visually impaired. The descriptive model is also suitable for generating utility values for the economic evaluation of vision-related programs and services.

Measurement of indirect costs for people with vision impairment.

From a societal perspective, chronic eye diseases can affect not only the person who has vision impairment but also the economics of that society. To obtain comprehensive medical and non-medical expenditures for people with impaired vision, direct and indirect costs should be collected. Indirect costs are usually not included in cost evaluation in health economics due to the difficulty of the data collection and analysis. Questionnaires and cost diaries have been developed in this study to estimate total resource use, expenses, and lost production from the participants or their caregivers due to the participants' vision loss. Pilot testing was conducted to verify the format, clarity of instructions, relevance of content and completeness of the questionnaires and diary. Modifications were then made to the format from feedback from the participants. Diaries using large print, audio and Braille facilitate data collection for people with impaired vision.