Development of an instrument to measure self-efficacy in caregivers of people with advanced cancer

Objective : Informal caregivers of people with advanced cancer experience many negative impacts as a result of their role. There is a lack of suitable measures specifically designed to assess their experience. This study aimed to develop a new measure to assess self-efficacy in caregivers of people with advanced cancer.

Methods : The development and testing of the new measure consisted of four separate, sequential phases: generation of issues, development of issues into items, pilot testing and field testing. In the generation of issues, 17 caregivers were interviewed to generate data. These data were analysed to generate codes, which were then systematically developed into items to construct the instrument. The instrument was pilot tested with 14 health professionals and five caregivers. It was then administered to a large sample for field testing to establish the psychometric properties, with established measures including the Brief Cope and the Family Appraisals for Caregiving Questionnaire for Palliative Care.

Results : Ninety-four caregivers completed the questionnaire booklet to establish the factor structure, reliability and validity. The factor analysis resulted in a 21-item, four-factor instrument, with the subscales being termed Resilience, Self-Maintenance, Emotional Connectivity and Instrumental Caregiving. The test-retest reliability and internal consistency were both excellent, ranging from 0.73 to 0.85 and 0.81 to 0.94, respectively. Six convergent and divergent hypotheses were made, and five were supported.

Conclusions : This study has developed a new instrument to assess self-efficacy in caregivers of people with advanced cancer. The result is a four-factor, 21-item instrument with demonstrated reliability and validity.

A tailored, supportive care intervention using systematic assessment designed for people with inoperable lung cancer: a randomised controlled trial

Objective : People with inoperable lung cancer experience higher levels of distress, more unmet needs and symptoms than other cancer patients. There is an urgent need to test innovative approaches to improve psychosocial and symptom outcomes in this group. This study tested the hypothesis that a tailored, multidisciplinary supportive care programme based on systematic needs assessment would reduce perceived unmet needs and distress and improve quality of life.

Methods : A randomised controlled trial design was used. The tailored intervention comprised two sessions at treatment commencement and completion. Sessions included a self-completed needs assessment, active listening, self-care education and communication of unmet psychosocial and symptom needs to the multidisciplinary team for management and referral. Outcomes were assessed with the Needs Assessment for Advanced Lung Cancer Patients, Hospital Anxiety and Depression Scale, Distress Thermometer and European Organization of Research and Treatment of Cancer Quality of Life Q-C30 V2.0.

Results : One hundred and eight patients with a diagnosis of inoperable lung or pleural cancer (including mesothelioma) were recruited from a specialist facility before the trial closed prematurely (original target 200). None of the primary contrasts of interest were significant (all p > 0.10), although change score analysis indicated a relative benefit from the intervention for unmet symptom needs at 8 and 12 weeks post-assessment (effect size = 0.55 and 0.40, respectively).

Conclusion : Although a novel approach, the hypothesis that the intervention would benefit perceived unmet needs, psychological morbidity, distress and health-related quality of life was not supported overall.

Supporting informal caregivers of people with advanced cancer: a literature review

Informal carers are people who provide care without a specific professional role. They provide diverse caregiving supports including disease-related problems, side effects of treatment and psychosocial impacts. This paper reports on a comprehensive review of caregiving literature, focusing specifically on cancer caregivers. The paper presents five observations drawn from the literature in order to make recommendations about how caregivers of people with advanced cancer can best be supported. The observations are: 1) caregivers are a heterogeneous group; 2) they have unique needs that differ to the patient; 3) their role includes more than attending to physical caregiving tasks; 4) they may feel unable to take a break from the role and 5) they need their own support which may be beneficial to their capacity to continue in the caregiving role. Recommendations for how health professionals can assist in supporting caregivers in their role are discussed.

Unmet needs and distress in people with inoperable lung cancer at the commencement of treatment

Purpose : People with lung cancer report a higher burden of unmet needs, specifically psychological and daily living unmet needs. They experience more psychological distress and more physical hardship than other tumour sites. This study examined the levels of unmet need and psychological distress in inoperable lung cancer patients at the start of treatment.

Methods : A cross-section survey methodology was employed using baseline data from a randomised controlled trial designed to evaluate a supportive care intervention. Eligible lung cancer patients were approached to participate at the start of treatment. Consenting patients completed questionnaires prior to or just after the commencement of treatment. Reliable and valid measures included Needs Assessment for Advanced Lung Cancer Patients, Hospital Anxiety and Depression Scale and Brief Distress Thermometer.

Results : Of the 108 patients participating, the top unmet need was ‘Dealing with concerns about your family’s fears and worries’ (62%); with the next four also coming from the psychological/emotional domain, but, on average, most needs related to medical communication. Thirty two percent of patients reported clinical or subclinical anxiety and 19% reported HADS scores suggestive of clinical or subclinical depression. Moreover, 39.8% of the sample reported distress above the cut-off on the distress thermometer and this was associated with higher needs for each need subscale (p < 0.05).

Conclusions : People with lung cancer have high levels of unmet needs especially regarding psychological/emotional or medical communication. People with lung cancer who are classified as distressed have more unmet needs.

Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative study

Purpose : Family caregivers of people with advanced cancer can provide extensive support to the patient. However, the role is not well defined and their experiences are poorly understood. This study aimed to explore how caregivers view their role and the impact of their caregiving.

Methods : A symbolic interactionist framework guided the in-depth individual interviews and grounded theory methodology was used to analyse the data. A total of 17 interviews were conducted: 13 with active caregivers and 4 with bereaved caregivers.

Results : Three dominant codes are presented. Caregivers lacked role recognition, as they struggled to recognise their role existed, even though they took on extensive and challenging tasks. Caregivers reported substantial loss or changes to their self-identity: with some caregivers reporting not being able to stop thinking about caregiving and others having difficulty answering questions about themselves. Caregivers also demonstrated difficulty in taking a break: active caregivers did not consider taking a break, whereas bereaved caregivers retrospectively admitted needing a break but reported an inability to take one.

Conclusions : Caregiving is complex and extensive. People who care for those with advanced cancer are in need of intervention to provide support and assistance to them in their role. However, this needs to be structured with consideration for how caregivers view their role.

The substantial personal burden experienced by younger people with hip or knee osteoarthritis

OBJECTIVE: To compare Health-Related Quality of Life (HRQoL) and psychological distress in younger people with hip or knee osteoarthritis (OA) to age- and sex-matched population norms, and evaluate work limitations in this group. METHOD: People aged 20-55 years with hip or knee OA were recruited from major hospitals (n = 126) and community advertisements (n = 21). HRQoL was assessed using the Assessment of Quality of Life (AQoL) instrument (minimal important difference 0.06 AQoL units) and compared to population norms. Psychological distress was assessed using the Kessler Psychological Distress Scale (K10) and the prevalence of high/very high distress (K10 score ≥22) was compared to Australian population data. Work limitations were evaluated using the Workplace Activity Limitations Scale (WALS). RESULTS: Considering most participants had a relatively recent OA diagnosis (<5 years), the extent of HRQoL impairment was unexpected. A very large reduction in HRQoL was evident for the overall sample, compared with population norms (mean difference -0.35 AQoL units, 95% CI -0.40 to -0.31). Females, people aged 40-49 years, and those with hip OA reported average HRQoL impairment of almost 40% (mean reductions -0.38 to -0.39 AQoL units). The overall prevalence of high/very high distress was 4 times higher than for the population (relative risk 4.19, 95% CI 3.53-4.98) and 67% reported moderate to considerable OA-related work disability, according to WALS scores. CONCLUSIONS: These results clearly demonstrate the substantial personal burden experienced by younger people with hip or knee OA, and support the provision of targeted services to improve HRQoL and maximise work participation in this group.

Keeping connected: the lives of young people with ongoing health conditions in Australia

This chapter draws from a three year longitudinal Australian Research Council (ARC) project conducted in Victoria, Australia with 31 young people who were living with ongoing health conditions. The aim of the Keeping Connected project was to elicit the young people’s views of schooling, their relationships with peers and teachers, and their altered educational opportunities, given their ongoing and widely varying health conditions. Elsewhere in the literature these young people are often described as living with chronic illness (Hopkins et al., 2013; Moss, 2012). Victoria, Australia, is home to more than 1.2 million children and young people, representing just under 25% of the national child population. The Royal Children’s Hospital Education Institute (RCHEI), one of the sponsoring research partners for this study is located in Melbourne, the capital city of Victoria. The study makes a unique contribution to our knowledge of chronic illness, or what we prefer to refer to as ongoing health conditions, which affect 12% of school age students in Australia. One of my ongoing observations is that not all research that is produced in the name of social justice or analysing exclusions in schooling is approached through the repositioning of the qualitative research which has occurred over the past two decades. Throughout this chapter I aim to demonstrate how a post qualitative approach can produce a secondary analysis of data once a large scale project is completed. Data can be reworked and represented through networks of the social world, in this case the networks of living with an ongoing health condition as a young person in Australia at the end of the first decade of the twentieth first century.

Development of a measure of health literacy for caregivers of people with cancer

Caregivers play a key role in supporting people with cancer. Little is known about challenges that caregivers might have when finding and understanding health information, making health-related decisions, and navigating the healthcare system. Using an innovative mixed-methods approach, the study developed and evaluated a tool to measure cancer caregiver health literacy.

Overview of cardiovascular risk in older people with diabetes: basic pathophysiology, risk factors and management

Increasing age is a risk factor for diabetes; consequently, diabetes is prevalent in older people. Older people with diabetes are at high risk of cardiovascular disease (CVD) and cardiovascular events, such as myocardial infarction and heart failure.Multiple pathological processes underlie CVD, including inflammation, oxidative stress, endothelial dysfunction, thrombosis and angiogenesis. These pathological processes are influenced by age, ethnicity, genetic makeup, obesity, hyperglycaemia,insulin resistance, dyslipidaemia, hypertension, renal disease, inappropriate diet and inactivity, which are components of the metabolic syndrome and CVD risk factors. The more risk factors present, the higher the risk of CVD. Significantly, vascular damage occurs slowly; therefore, it is essential to undertake a comprehensive vascular risk assessment and manage the risk early in life to improve the individual’soutcomes. Management strategies must be negotiated with the individual and appropriately tailored to their CVD risk and functional status, life expectancy and safety.

Validation of the personal wellbeing index for people with end stage kidney disease

The quality of life of people with end stage kidney disease (ESKD) has traditionally been measured using instruments that emphasise objective health status. The present study validates an alternative measure, the Personal Wellbeing Index (PWI), which measures subjective wellbeing. An Australian ESKD sample (N = 172, Mean age = 64.04, SD = 14.82) completed the PWI as well as health-specific quality of life measures. The PWI was subject to confirmatory factor analysis, and a series of regressions and between-group comparisons were performed to reveal that it is a psychometrically appropriate measure for this sample. The PWI and health-specific measures each yield different and complementary results. Thus, the PWI is proposed as a complement to existing health-related quality of life tools, in order to broaden understanding of the patient’s subjective experience. The resulting profile is argued to better inform targeted interventions to improve the quality of life of people with ESKD.

The experiences and needs of family carers of people with diabetes at the end of life

ABSTRACT
Diabetes is a common, increasingly prevalent chronic disease. Many people requiring palliative care have diabetes. Diabetes requires lifelong self-care tasks. Family carers frequently perform these tasks when the person with diabetes is no longer able to perform them, but there is a lack of information about carers’ needs to enable them to undertake their new care tasks. The study aimed to collect information from family carers of people with diabetes requiring palliative care about their views and experiences of managing a family member’s diabetes at the end of life and identify their needs to enable them to undertake diabetes care tasks. Data were collected during individual, semistructured interviews with 10 family members caring for a person with diabetes receiving palliative care. The 4 key themes identified were as follows: I didn’t know what to do: it’s a big responsibility; I need education; and it’s important to manage diabetes. Family members/carers feel anxious about their increasing responsibility when caring for their family member’s diabetes and need information and education to help them monitor and interpret blood glucose levels, mange high or low blood glucose levels, and administer glucose-lowering medicines safely and confidently.

People making choices: the support needs and preferences of people with psychosocial disability: project summary

The aim of this project was to improve understanding of the choices that people with psychosocial disability would make about support for priority life goals if they were offered individualised funding packages. This was timely given the inclusion of psychosocial disability in the National Disability Insurance Scheme (NDIS), which has been designed to enable Australians with disability the opportunity to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports (Commonwealth of Australia, 2013b).

On the potential for psychological researchers and psychologists to promote the social inclusion of people with disability: A review

© 2015 Australian Psychological Society. Objective: This paper outlines different approaches to understanding disability and describes ways in which psychological researchers and psychologists can promote the social inclusion of people with disability. Method: Narrative review drawing on writings and research from psychology and disability studies. Results: Five prominent models of disability appear in the literature (moral, medical, social, biopsychosocial, and post-modern), all of which have relevance to the lives of people with disability. Conceptualisations commonly used to understand the experience of disability from a psychological perspective include stigma and psycho-emotional disablism. There is evidence that people with disability wish to have greater involvement in research (e.g., as consultants and partners in research about them, and as participants in mainstream research) and to see research findings translated into practice. Evidence is emerging that can be used to underpin psychologists work with (a) communities (to foster social change and social justice, and to reduce stigma); (b) organisations, such as schools, workplaces, and disability service providers (to help develop inclusive and supportive environments); (c) families (to promote optimism, alternative understandings of disability, and a sense of control, as well as developing behaviour support plans and providing referrals to other sources of practical support); and (d) people with disability (to assist them with the issues they bring to therapy while being mindful of the potential for psycho-emotional disablism to colour the material presented). Conclusion: Psychological researchers and psychologists have significant potential to contribute to the social inclusion of people with disability.

Involving people with diabetes and the wider community in diabetes research: a realist review protocol

BACKGROUND: Patient and public involvement in diabetes research is now actively encouraged in different countries because it is believed that involving people with experience of the condition will improve the quality and relevance of the research. However, reviews of patient involvement have noted that inadequate resources, patients' and communities' lack of research knowledge, and researchers' lack of skills to involve patients and communities in research may present significant contextual barriers. Little is known about the extent of patient/community involvement in designing or delivering interventions for people with diabetes. A realist review of involvement will contribute to assessing when, how and why involvement works, or does not work, to produce better diabetes interventions.

METHODS/DESIGN: This protocol outlines the process for conducting a realist review to map how patients and the public have been involved in diabetes research to date. The review questions ask the following: How have people with diabetes and the wider community been involved in diabetes research? What are the characteristics of the process that appear to explain the relative success or failure of involvement? How has involvement (or lack of involvement) in diabetes research influenced the development and conduct of diabetes research? The degree of support in the surrounding context will be assessed alongside the ways in which people interact in different settings to identify patterns of interaction between context, mechanisms and outcomes in different research projects. The level and extent of the involvement will be described for each stage of the research project. The descriptions will be critically reviewed by the people with diabetes on our review team. In addition, researchers and patients in diabetes research will be asked to comment. Information from researcher-patient experiences and documents will be compared to theories of involvement across a range of disciplines to create a mid-range theory describing how involvement (or lack of involvement) in diabetes research influences the development and conduct of diabetes research.