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Active ingredients of a person-centred intervention for people on HIV treatment: analysis of mixed methods trial data.

ABSTRACT: A new model of care is required to meet the changing needs of people living with HIV (PLWH), particularly in low and middle-income countries, where prevalence is highest. We evaluated a palliative care intervention for PLWH in Mombasa, Kenya. Although we found no effect on pain (primary outcome), there was a positive effect on mental health (secondary outcome) in the intervention group. To inform replication and implementation, we have determined the active ingredients of the intervention and their mechanisms of action.We conducted a randomised controlled trial (RCT) with qualitative exit interviews in HIV clinic attenders. The intervention was delivered over 5 months, with a minimum of 7 clinical contacts. Longitudinal quantitative data on components of care received were analysed using area under the curve and logistic regression. Qualitative data were analysed using inductive and deductive thematic analysis.Quantitative data analysis identified that intervention patients received more weak opioid, laxatives, discussion about spiritual worries, emotional support from staff for themselves and their families, time to talk about worries, discussion about future and planning ahead. Qualitative data analysis found that patients reported that having time to talk, appropriate pain medication and effective health education was of therapeutic value for their psychological well-being. Integration of mixed method findings suggest that positive effect in quantitative measures of mental health and well-being are attributable to the active ingredients of: appropriate medication, effective health education and counselling, and having time to talk in clinical encounters. Mechanisms of action include symptom relief, improved understanding of illness and treatment, and support focused on articulated concerns.Routine care must provide opportunities and means for existing clinical staff to make routine appointments more person-centred. This approach enabled staff to identify and manage multidimensional problems and provide tailored health education and counselling.ClinicalTrials.gov ( NCT01608802 ). Registered 12th May 2012.

SUBMITTER: Lowther K

PROVIDER: S-EPMC5761128 | biostudies-literature | 2018 Jan

REPOSITORIES: biostudies-literature

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Active ingredients of a person-centred intervention for people on HIV treatment: analysis of mixed methods trial data.

Lowther Keira K Harding Richard R Simms Victoria V Ahmed Aabid A Ali Zipporah Z Gikaara Nancy N Sherr Lorraine L Kariuki Hellen H Higginson Irene J IJ Selman Lucy Ellen LE

BMC infectious diseases 20180110 1

<h4>Background</h4>A new model of care is required to meet the changing needs of people living with HIV (PLWH), particularly in low and middle-income countries, where prevalence is highest. We evaluated a palliative care intervention for PLWH in Mombasa, Kenya. Although we found no effect on pain (primary outcome), there was a positive effect on mental health (secondary outcome) in the intervention group. To inform replication and implementation, we have determined the active ingredients of the ...[more]

PMID: 29316883

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Project description:IntroductionIndividuals at an inherited high-risk of developing adult-onset disease, such as breast cancer, are rare in the population. These individuals require lifelong clinical, psychological and reproductive assistance. After a positive germline test result, clinical genetic services provide support and care coordination. However, ongoing systematic clinical follow-up programmes are uncommon. Digital health solutions offer efficient and sustainable ways to deliver affordable and equitable care. This paper outlines the codesign and development of a digital health platform to facilitate long-term clinical and psychological care, and foster self-efficacy in individuals with a genetic disease predisposition.Methods and analysisWe adopt a mixed-methods approach for data gathering and analysis. Data collection is in two phases. In phase 1, 300 individuals with a high-risk genetic predisposition to adult disease will undertake an online survey to assess their use of digital health applications (apps). In phase 2, we will conduct focus groups with 40 individuals with a genetic predisposition to cardiac or cancer syndromes, and 30 clinicians from diverse specialities involved in their care. These focus groups will inform the platform's content, functionality and user interface design, as well as identify the barriers and enablers to the adoption and retention of the platform by all endusers. The focus groups will be audiorecorded and transcribed, and thematic and content data analysis will be undertaken by adopting the Unified Theory of Acceptance and Use of Technology. Descriptive statistics will be calculated from the survey data. Phase 3 will identify the core skillsets for a novel digital health coordinator role. Outcomes from phases 1 and 2 will inform development of the digital platform, which will be user-tested and optimised in phase 4.Ethics and disseminationThis study was approved by the Peter MacCallum Human Research Ethics Committee (HREC/88892/PMCC). Results will be disseminated in academic forums, peer-reviewed publications and used to optimise clinical care.

Project description:BACKGROUND:Mealtimes are important to quality of life for residents in long-term care (LTC). CHOICE (which stands for Connecting, Honouring dignity, Offering support, supporting Identity, Creating opportunities, and Enjoyment) is a multi-component intervention to improve relationship-centred care (RCC) and overall mealtime experience for residents. The objective of this developmental evaluation was to determine: a) if the dining experience (e.g. physical, social and RCC practices) could be modified with the CHOICE Program, and b) how program components needed to be adapted and/or if new components were required. METHODS:A mixed methods study conducted between April-November 2016 included two home areas (64 residents; 25 care staff/home management) within a single LTC home in Ontario. Mealtime Scan (MTS), which measures mealtime experience at the level of the dining room, was used to evaluate the effectiveness of CHOICE implementation at four time points. Change in physical, social, RCC dining environment ratings and overall quality of the mealtime experience over time was determined with linear mixed-effects analyses (i.e., repeated measures). Semi-structured interviews (n?=?9) were conducted with home staff to identify what components of the intervention worked well and what improvements could be made. RESULTS:Physical and overall mealtime environment ratings showed improvement over time in both areas; one home area also improved social ratings (p?<?0.05). Interviews revealed in-depth insights into the program and implementation process: i) Knowing the context and culture to meet staff and resident needs; ii) Getting everyone on board, including management; iii) Keeping communication lines open throughout the process; iv) Sharing responsibility and accountability for mealtime goals and challenges; v) Empowering and supporting staff's creative mealtime initiatives. CONCLUSIONS:This developmental evaluation demonstrated the potential value of CHOICE. Findings suggest a need to: extend the time to tailor program components; empower home staff in change management; and provide increased coaching.

Project description:Volunteers are critical to supporting health care systems worldwide. For organisations that rely on volunteers, service to clients can be disrupted when volunteers leave their roles. Volunteer retention is a multi-layered phenomenon. In this mixed methods case-control study, we compared two naturally-occurring volunteer groups supporting a complex primary care-based programme for older adults in the community: volunteers retained by the programme, and volunteers that left. Our objectives were to describe differences between the groups and also understand how compassion changed over time for those that stayed. We collected quantitative data on demographics, the UCLA Geriatric Attitudes Scale, the Professional Quality of Life Index, the Basic Empathy Scale, the Reasons for Volunteering subscale of the Volunteerism Questionnaire and the 5-level EQ-5D. Qualitative data were collected through focus groups/interviews. Overall, 78 volunteers completed surveys and 23 participated in focus groups/interviews. Volunteers that stayed were more likely to be a little older and were a slightly higher proportion male than those who left. They also had significantly less positive attitudes towards older adults, descriptively lower Cognitive Empathy and descriptively higher Secondary Traumatic Stress. Compared to volunteers who left, volunteers retained were more likely to have said they were volunteering for Enhancement or Social purposes; however, these differences were non-significant. Over time, Compassion Satisfaction decreased with a medium effect size for those that stayed, and Burnout decreased with a small effect size. Volunteers that stayed described more logistical and client-related aspects of the programme were working well. We recommend that volunteer programmes communicate positive programme impacts that could enhance volunteers' development, communicate any client impacts to volunteers to reinforce volunteers' purposes for volunteering (thus reinforcing that their work is meaningful), and ensure logistical aspects of volunteer role work well.

Project description:BACKGROUND:Older people are more likely to be living with cancer and multiple long-term conditions, but their needs, preferences for treatments, health priorities and lifestyle are often not identified or well-understood. There is a need to move towards a more comprehensive person-centred approach to care that focuses on the cumulative impact of a number of conditions on daily activities and quality of life. This paper describes the intervention planning process for CHAT& PLANTM, a structured conversation intervention to promote personalised care and support self-management in older adults with complex conditions. METHODS:A theory-, evidence- and person-based approach to intervention development was undertaken. The intervention planning and development process included reviewing relevant literature and existing guidelines, developing guiding principles, conducting a behavioural analysis and constructing a logic model. Optimisation of the intervention and its implementation involved qualitative interviews with older adults with multimorbidity (n = 8), family caregivers (n = 2) and healthcare professionals (HCPs) (n = 20). Data were analysed thematically and informed changes to the intervention prototype. RESULTS:Review findings reflected the importance of HCPs taking a person-centred (rather than disease-centred) approach to their work with older people living with multimorbidity. This approach involves HCPs giving health service users the opportunity to voice their priorities, then using these to underpin the treatment and care plan that follow. Findings from the planning stage indicated that taking a structured approach to interactions between HCPs and health service users would enable elicitation of individual concerns, development of a plan tailored to that individual, negotiation of roles and review of goals as individual priorities change. In the optimisation stage, older adults and HCPs commented on the idea of a structured conversation to promote person-centred care and on its feasibility in practice. The idea of a shared, person-centred approach to care was viewed positively. Concerns were raised about possible extra work for those receiving or delivering care, time and staffing, and risk of creating another "tick-box" exercise for staff. Participants concluded that anyone with the appropriate skills could potentially deliver the intervention, but training was likely to be required to ensure correct utilisation and self-efficacy to deliver to the intervention. CONCLUSIONS:CHAT&PLAN, a structured person-centred conversation guide appears acceptable and appealing to HCPs and older adults with multimorbidity. Further development of the CHAT&PLAN intervention should focus on ensuring that staff are adequately trained and supported to implement the intervention.

Project description:BackgroundAs the population of older adults increases, the complexity of care required to support those who choose to remain in the community amplifies. Anticipatory Care Planning (ACP), through earlier identification of healthcare needs, is evidenced to improve quality of life, decrease aggressive interventions, and prolong life. With patient acceptability of growing importance in the design, implementation, and evaluation of healthcare interventions, this study reports on the acceptability of a primary care based ACP intervention on the island of Ireland.MethodsAs part of the evaluation of a feasibility cluster randomized controlled trial (cRCT) testing an ACP intervention for older people at risk of functional decline, intervention participants [n = 34] were interviewed in their homes at 10-week follow-up to determine acceptability. The intervention consisted of home visits by specifically trained registered nurses who assessed participants' health, discussed their health goals and plans, and devised an anticipatory care plan in collaboration with participants' GPs and adjunct clinical pharmacist. Thematic analysis was employed to analyze interview data. The feasibility cRCT involved eight general practitioner (GP) practices as cluster sites, stratified by jurisdiction, four in Northern Ireland (NI) (two intervention, two control), and four in the Republic of Ireland (ROI) (two intervention, two control). Participants were assessed for risk of functional decline. A total of 34 patients received the intervention and 31 received usual care.FindingsThematic analysis resulted in five main themes: timing of intervention, understanding of ACP, personality & individual differences, loneliness & social isolation, and views on healthcare provision. These map across the Four Factor Model of Acceptability ('4FMA'), a newly developed conceptual framework comprising four components: intervention factors, personal factors, social support factors, and healthcare provision factors.ConclusionAcceptability of this primary care based ACP intervention was high, with nurses' home visits, GP anchorage, multidisciplinary working, personalized approach, and active listening regarded as beneficial. Appropriate timing, and patient health education emerged as vital.

Project description:INTRODUCTION:Older people with hip fractures often require long-term care and a crucial aspect is the provision of quality health information to patients and their carers to support continuity of care. If patients are well informed about their health condition and caring needs, particularly posthospital discharge into the community setting, this may support recovery and improve quality of life. As internet and mobile access reach every household, it is possible to deliver a new model of service using a digital education platform as a personal health hub where both patients and their providers of care can establish a more efficient information integration and exchange process. This protocol details proposed research, which aims to develop a 'model of care' by using a digital health solution that will allow delivery of high quality and patient-centred information, integrated into the existing process delivered within the community setting. METHODS AND ANALYSIS:This phase of the study uses a pragmatic mixed-methods design and a participatory approach through engagement of patients, their carers and healthcare providers from multiple disciplines to inform the development of a digital health platform. Quantitative methods will explore health literacy and e-health literacy among older people with hip fractures admitted to the two public tertiary care hospitals in Adelaide, South Australia. Qualitative methods will provide an understanding of aspects of content and context required for the digital health platform to be developed in order to deliver quality health information. The study will use appropriate theoretical frameworks and constructs to guide the design, analysis and overall conduct of the research study. The scope of the study intends to ultimately empower patients and their carers to improve self-management and to better use coordinated services at the community level. This could prevent further falls including associated injuries or new fractures; reduce new hospital admissions and improve confidence and engagement by limiting the psychologically restrictive 'fear of falls'. ETHICS AND DISSEMINATION:The study has been approved by the Human Research Ethics Committee of the Central Adelaide Local Health Network, South Australia (SA) Health, Government of South Australia and the University of Adelaide Human Research Ethics Committee. Findings from the study will be published in suitable peer-reviewed journals and disseminated through workshops or conferences.

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Active ingredients of a person-centred intervention for people on HIV treatment: analysis of mixed methods trial data.

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Active ingredients of a person-centred intervention for people on HIV treatment: analysis of mixed methods trial data.

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