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Cancer caregivers' experiences of prognosis in Australia: a qualitative interview study.

ABSTRACT: OBJECTIVES:Forecasting survival in cancer is a particularly challenging facet of oncological work and can involve complex interactions with patients and their families. While there is considerable research on patient experiences of being provided with, or becoming aware of, their prognosis, there has been much less emphasis placed on the experiences of caregivers. The aim of this paper was to examine caregivers' experiences of prognosis. DESIGN:This study used semistructured interviews; transcripts were analysed thematically using the framework approach. These data are part of a larger research project focused on experiences of cancer survivorship. SETTING:Recruitment was from two metropolitan hospitals in Queensland, Australia. PARTICIPANTS:50 caregivers of patients living with cancer and receiving treatment at two metropolitan hospitals (32% male, 68% female) participated in this study. RESULTS:Four main themes were identified: (1) caregivers' uncertainty around the meaning and implications of prognosis, (2) caregivers' sense of exclusion in prognostic conversations, (3) the practice of situating prognosis within a context of hope and (4) the precarious balance between realism, optimism and strategic 'ignorance'. CONCLUSIONS:Caregivers are in many respects the unseen third party of prognostic communication. Developing a better understanding of caregivers' perceptions of prognosis, including how this may be challenged, accepted or otherwise, is important in engaging caregivers in the process of communicating prognostic information. Facilitating greater participation by caregivers in prognostic conversations could potentially address evident complexities and even improve the experiences of all stakeholders in cancer care settings.

SUBMITTER: Lewis S

PROVIDER: S-EPMC7045218 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Cancer caregivers' experiences of prognosis in Australia: a qualitative interview study.

Lewis Sophie S Broom Alex A Kenny Katherine K Kirby Emma E

BMJ open 20200119 1

<h4>Objectives</h4>Forecasting survival in cancer is a particularly challenging facet of oncological work and can involve complex interactions with patients and their families. While there is considerable research on patient experiences of being provided with, or becoming aware of, their prognosis, there has been much less emphasis placed on the experiences of caregivers. The aim of this paper was to examine caregivers' experiences of prognosis.<h4>Design</h4>This study used semistructured inter ...[more]

PMID: 31959606

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Project description:ObjectiveTo explore the experiences of cancer caregivers who live in rural Australia and travel to a metropolitan cancer health service to access cancer treatment.DesignA qualitative study using semistructured, audio-recorded interviews conducted between December 2017 and July 2018 with caregivers and social workers. Thematic analysis using interpretative descriptive techniques performed on textual interview data within a critical realist paradigm to develop understanding of rural caregivers' lived experiences.SettingParticipants were from rural areas attending a metropolitan cancer centre in Australia and social workers.Participants21 caregivers (16 female) of people with cancer living in rural Australia within a minimum distance of 100 km from the metropolitan cancer centre where they access treatment, and five social workers employed at a metropolitan cancer service with experience of working with rural patients and caregivers.ResultsThematic analysis developed two overarching themes: theme 1: caregiving in the rural setting describes the unique circumstance in which caregiving for a person with cancer takes place in the rural setting at considerable distance from the cancer service where the person receives treatment. This is explored in three categories: 'Rural community and culture', 'Life adjustments' and 'Available supports'. Theme 2: accessing metropolitan cancer services captures the multiplicity of tasks and challenges involved in organising and coordinating the journey to access cancer treatment in a metropolitan hospital, which is presented in the following categories: 'Travel', 'Accommodation' and 'Health system navigation'.ConclusionsCaregivers who live in rural areas face significant challenges when confronting geographic isolation between their rural home environment and the metropolitan setting, where the patient accessed cancer treatment. There is a need for healthcare services to identify this group to develop feasible and sustainable ways to provide interventions that have the best chance of assisting rural caregivers in supporting the patient while maintaining their own health and well-being.

Project description:BACKGROUND:Motivational interviewing is an effective intervention for supporting behavior change but traditionally depends on face-to-face dialogue with a human counselor. This study addressed a key challenge for the goal of developing social robotic motivational interviewers: creating an interview protocol, within the constraints of current artificial intelligence, which participants will find engaging and helpful. OBJECTIVE:The aim of this study was to explore participants' qualitative experiences of a motivational interview delivered by a social robot, including their evaluation of usability of the robot during the interaction and its impact on their motivation. METHODS:NAO robots are humanoid, child-sized social robots. We programmed a NAO robot with Choregraphe software to deliver a scripted motivational interview focused on increasing physical activity. The interview was designed to be comprehensible even without an empathetic response from the robot. Robot breathing and face-tracking functions were used to give an impression of attentiveness. A total of 20 participants took part in the robot-delivered motivational interview and evaluated it after 1 week by responding to a series of written open-ended questions. Each participant was left alone to speak aloud with the robot, advancing through a series of questions by tapping the robot's head sensor. Evaluations were content-analyzed utilizing Boyatzis' steps: (1) sampling and design, (2) developing themes and codes, and (3) validating and applying the codes. RESULTS:Themes focused on interaction with the robot, motivation, change in physical activity, and overall evaluation of the intervention. Participants found the instructions clear and the navigation easy to use. Most enjoyed the interaction but also found it was restricted by the lack of individualized response from the robot. Many positively appraised the nonjudgmental aspect of the interview and how it gave space to articulate their motivation for change. Some participants felt that the intervention increased their physical activity levels. CONCLUSIONS:Social robots can achieve a fundamental objective of motivational interviewing, encouraging participants to articulate their goals and dilemmas aloud. Because they are perceived as nonjudgmental, robots may have advantages over more humanoid avatars for delivering virtual support for behavioral change.

Project description:OBJECTIVES:Endometriosis is a chronic disease with no known cure. Persons affected by this disease often use complementary therapies such as dietary changes to reduce their symptoms, and so it is important to investigate whether and how these therapies affect endometriosis symptoms. The aim of this study was to explore how persons with endometriosis experienced their health after dietary changes. DESIGN:Semi-structured qualitative interviews were conducted with 12 persons with endometriosis who had made individual dietary changes aimed at decreasing their endometriosis symptoms. The interviews were recorded and transcribed verbatim, and analysed using thematic analysis. SETTING:Region Västra Götaland and the estern part of Central Sweden, Sweden. PARTICIPANTS:Twelve persons with endometriosis aged 28 to 44 were recruited from two Swedish endometriosis support forums on the Internet. RESULTS:Participants experienced an increase in well-being and a decrease in symptoms following their dietary and lifestyle changes. They also felt that the dietary changes led to increased energy levels and a deeper understanding of how they could affect their health by listening to their body's reactions. The participants understood that they could influence their symptoms through lifestyle changes. Support from family and friends was important in implementing and sustaining the dietary changes. However, the participants stressed the lack of support from healthcare professionals. CONCLUSIONS:This study contributes to filling the knowledge gap about dietary strategies in endometriosis and lifestyle change as a method of alleviating suffering and increasing well-being. An important finding is that the participants experienced decreased symptoms and increased well-being after adopting an individually-adapted diet. Healthcare professionals should take their patients' knowledge and experience into consideration, and allow patients to participate in their own care. Further research is necessary to give evidenced-based dietary advices in endometriosis.

Project description:ObjectiveLong-term adherence to evidence-based medications in cardiometabolic diseases remains poor, despite extensive efforts to develop and test interventions and deploy clinician performance incentives. The limited success of interventions may be due to ignored factors such as patients' experience of medication-taking. Despite being potentially addressable by clinicians, these factors have not been sufficiently explored, which is particularly important as patients use increasing numbers of medications. The aim is to explore patient perspectives on medication-taking, medication properties that are barriers to adherence, and coping strategies for their medication regimen.DesignIndividual, in-person, semistructured qualitative interviews.SettingUrban healthcare system.ParticipantsTwenty-six adults taking ≥2 oral medications for diabetes, hypertension or hyperlipidaemia with non-adherence. Interviews were digitally recorded and transcribed. Data were analysed using developed codes to generate themes. Representative quotations were selected to illustrate themes.ResultsParticipants' mean age was 55 years, 46% were female and 39% were non-white. Six key themes were identified: (1) medication-taking viewed as a highly inconvenient action (that patients struggle to remember to do); (2) negative implications because of inconvenience or illness perceptions; (3) actual medication regimens can deviate substantially from prescribed regimens; (4) certain medication properties (especially size and similar appearance with others) may contribute to adherence deviations; (5) development of numerous coping strategies to overcome barriers and (6) suggestions to make medication-taking easier (including reducing drug costs, simplifying regimen or dosing frequency and creating more palatable medications).ConclusionPatients with poor adherence often find taking prescription medications to be undesirable and take them differently than prescribed in part due to properties of the medications themselves and coping strategies they have developed to overcome medication-taking challenges. Interventions that reduce the inconvenience of medication use and tailor medications to individual needs may be a welcome development.

Project description:ObjectiveChildhood glaucoma is a chronic vision-threatening condition that may significantly impact an individual's psychosocial well-being. There is a paucity of literature investigating the quality of life (QoL) in children with glaucoma. The aim of this study was to investigate and report on the QoL issues encountered by children with glaucoma.DesignThis is a qualitative interview study. Data were collected through semistructured interviews. NVivo V.12 software (QSR International Pty Ltd, Melbourne, Australia) was used to analyse and code data to identify QoL themes. The prominence of QoL themes was determined by the number of children who raised issues connected to the corresponding theme.SettingInterviews were conducted via telephone or videoconferencing between April 2020 and July 2021.ParticipantsEighteen children with glaucoma, aged 8-17 years, who resided in Australia, were recruited from the Australian and New Zealand Registry of Advanced Glaucoma.ResultsMedian child age was 12.1 years (IQR: 9.7-14.5 years) and 33% were female. Seven QoL themes were identified: 'coping', 'inconveniences' and 'emotional well-being' were more prominent themes than 'symptoms', 'ocular health concerns', 'social well-being' and 'autonomy'. Adaptive coping strategies included resilience throughout clinical examinations and establishing positive relationships with ophthalmologists. These minimised inconveniences related to clinic waiting times and pupillary dilatation. External to the clinical setting, children often dissociated from their glaucoma but struggled with glare symptoms and feeling misunderstood by fellow peers. Older children aged 13-17 years commonly disengaged from their glaucoma care and expressed an unwillingness to attend ophthalmic appointments. Older children further raised issues with career options, obtaining a driver's licence and family planning under the theme of autonomy.ConclusionsThe psychosocial impact of childhood glaucoma extends beyond the clinical environment and was minimised using coping strategies. Older children may require additional social and ophthalmic support as they transition into adulthood.

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Cancer caregivers' experiences of prognosis in Australia: a qualitative interview study.

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Cancer caregivers' experiences of prognosis in Australia: a qualitative interview study.

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