"Taking care of myself as long as I can": How People with Dementia Configure Self-Management Systems.
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ABSTRACT:
SUBMITTER: Dixon E
PROVIDER: S-EPMC8265518 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Dementia is a major challenge for health and social care services. People living with dementia in the earlier stages experience a "care-gap". Although they may address this gap in care, self-management interventions have not been provided to people with dementia. It is unclear how to conceptualise self-management for this group and few published papers address intervention design. Initial focusing work used a logic mapping approach, interviews with key stakeholders, including people with dementia and their family members. An initial set of self-management targets were identified for potential intervention. Self-management for people living with dementia was conceptualised as covering five targets: (1) relationship with family, (2) maintaining an active lifestyle, (3) psychological wellbeing, (4) techniques to cope with memory changes, and (5) information about dementia. These targets were used to focus literature reviewing to explore an evidence base for the conceptualisation. We discuss the utility of the Corbin and Strauss (Unending work and care: managing chronic illness at home. Jossey-Bass, Oxford, 1988) model of self-management, specifically that self-management for people living with dementia should be conceptualised as emphasising the importance of "everyday life work" (targets 1 and 2) and "biographical work" (target 3), with inclusion of but less emphasis on specific "illness work" (targets 4, 5). We argue that self-management is possible for people with dementia, with a strengths focus and emphasis on quality of life, which can be achieved despite cognitive impairments. Further development and testing of such interventions is required to provide much needed support for people in early stages of dementia.
| S-EPMC5549115 | biostudies-other
Project description:The health of people living with HIV (PLWH) and the sustained success of antiretroviral therapy (ART) programmes depends on PLWH's motivation and ability to self-manage the condition over the long term, including adherence to drugs on a daily basis. PLWH's self-management of HIV and their wellbeing are likely to be interrelated. Successful self-management sustains wellbeing, and wellbeing is likely to motivate continued self-management. Detailed research is lacking on PLWH's self-management processes on ART in resource-limited settings. This paper presents findings from a study of PLWH's self-management and wellbeing in Wakiso District, Uganda. Thirty-eight PLWH (20 women, 18 men) were purposefully selected at ART facilities run by the government and by The AIDS Support Organisation in and around Entebbe. Two in-depth interviews were completed with each participant over three or four visits. Many were struggling economically, however the recovery of health and hope on ART had enhanced wellbeing and motivated self-management. The majority were managing their condition well across three broad domains of self-management. First, they had mobilised resources, notably through good relationships with health workers. Advice and counselling had helped them to reconceptualise their condition and situation more positively and see hope for the future, motivating their work to self-manage. Many had also developed a new network of support through contacts they had developed at the ART clinic. Second, they had acquired knowledge and skills to manage their health, a useful framework to manage their condition and to live their life. Third, participants were psychologically adjusting to their condition and their new 'self': they saw HIV as a normal disease, were coping with stigma and had regained self-esteem, and were finding meaning in life. Our study demonstrates the centrality of social relationships and other non-medical aspects of wellbeing for self-management which ART programmes might explore further and encourage.
| S-EPMC4726730 | biostudies-other
Project description:ObjectivesTo explore young people's experiences of eczema self-management and interacting with health professionals.DesignSecondary qualitative data analysis of data sets from two semistructured interview studies. Data were analysed using inductive thematic analysis.SettingParticipants were recruited from the UK primary care, dermatology departments and a community-based sample (eg, patient representative groups, social media).ParticipantsData included 28 interviews with young people with eczema aged 13-25 years (mean age=19.5 years; 20 female).ResultsAlthough topical treatments were generally perceived as effective, young people expressed doubts about their long-term effectiveness, and concerns around the safety and an over-reliance on topical corticosteroids. Participants welcomed the opportunity to take an active role in their eczema management, but new roles and responsibilities also came with initial apprehension and challenges, including communicating their treatment concerns and preferences with health professionals, feeling unprepared for transition to an adult clinic and obtaining treatments. Decisions regarding whether to engage in behaviours that would exacerbate their eczema (eg, irritants/triggers, scratching) were influenced by young people's beliefs regarding negative consequences of these behaviours, and perceived control over the behaviour and its negative consequences.ConclusionsBehavioural change interventions must address the treatment concerns of young people and equip them with the knowledge, skills and confidence to take an active role in their own eczema management.
| S-EPMC7789449 | biostudies-literature
Project description:ObjectivesSignificant problems with patients engaging with diabetes self-management education (DSME) exist. The role of healthcare professionals (HCPs) has been highlighted, with a lack of enthusiasm, inadequate information provision and poor promotion of available programmes all cited as affecting patients' decisions to attend. However, little is known about HCPs' views towards DSME. This study investigates the views of HCPs towards self-management generally and self-management in the context of DSME more specifically.DesignA qualitative study using semi-structured interviews to investigate HCPs views of type 2 diabetes self-management and DSME. Data were analysed thematically and emergent themes were mapped on to the constructs of Normalisation Process Theory (NPT).SettingTwo boroughs in London, UK.ParticipantsSampling was purposive to recruit a diverse range of professional roles including GPs, practice nurses, diabetes specialist nurses, healthcare assistants (HCAs), receptionists and commissioners of care.ResultsInterviews were conducted with 22 participants. The NPT analysis demonstrated that while a self-management approach to diabetes care was viewed by HCPs as necessary and, in principle, valuable, the reality is much more complex. HCPs expressed ambivalence about pushing certain patients into self-managing, preferring to retain responsibility. There was a lack of awareness among HCPs about the content of DSME and benefits to patients. Commitment to and engagement with DSME was tempered by concerns about suitability for some patients. There was little evidence of communication between providers of group-based DSME and HCPs or of HCPs engaging in work to follow-up non-attenders.ConclusionsHCPs have concerns about the appropriateness of DSME for all patients and discussed challenges to engaging with and performing the tasks required to embed the approach within practice. DSME, as a means of supporting self-management, was considered important in theory, but there was little evidence of HCPs seeing their role as extending beyond providing referrals.
| S-EPMC6661639 | biostudies-literature
Project description:BackgroundThe benefits of electronic health support for dementia caregivers are increasingly recognized. Reaching caregivers of people with early-stage dementia could prevent high levels of burden and psychological problems in the later stages.ObjectiveThe current study evaluates the effectiveness of the blended care self-management program, Partner in Balance, compared to a control group.MethodsA single-blind randomized controlled trial with 81 family caregivers of community-dwelling people with mild dementia was conducted. Participants were randomly assigned to either the 8-week, blended care self-management Partner in Balance program (N=41) or a waiting-list control group (N=40) receiving usual care (low-frequent counseling). The program combines face-to-face coaching with tailored Web-based modules. Data were collected at baseline and after 8 weeks in writing by an independent research assistant who was blinded to the treatment. The primary proximal outcome was self-efficacy (Caregiver Self-Efficacy Scale) and the primary distal outcome was symptoms of depression (Center for Epidemiological Studies Depression Scale). Secondary outcomes included mastery (Pearlin Mastery Scale), quality of life (Investigation Choice Experiments for the Preferences of Older People), and psychological complaints (Hospital Anxiety and Depression Scale-Anxiety and Perceived Stress Scale).ResultsA significant increase in favor of the intervention group was demonstrated for self-efficacy (care management, P=.002; service use P=.001), mastery (P=.001), and quality of life (P=.032). Effect sizes were medium for quality of life (d=0.58) and high for self-efficacy care management and service use (d=0.85 and d=0.93, respectively) and mastery (d=0.94). No significant differences between the groups were found on depressive symptoms, anxiety, and perceived stress.ConclusionsThis study evaluated the first blended-care intervention for caregivers of people with early-stage dementia and demonstrated a significant improvement in self-efficacy, mastery, and quality of life after receiving the Partner in Balance intervention, compared to a waiting-list control group receiving care as usual. Contrary to our expectations, the intervention did not decrease symptoms of depression, anxiety, or perceived stress. However, the levels of psychological complaints were relatively low in the study sample. Future studies including long-term follow up could clarify if an increase in self-efficacy results in a decrease or prevention of increased stress and depression. To conclude, the program can provide accessible preventative care to future generations of caregivers of people with early-stage dementia.Trial registrationNetherlands Trial Register NTR4748; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4748 (Archived by WebCite at http://www.webcitation.org/6vSb2t9Mg).
| S-EPMC6064039 | biostudies-literature
Project description: Not available
| S-EPMC6491165 | biostudies-literature
Project description: Not available
| S-EPMC10010156 | biostudies-literature
Project description:As the population ages, the relative and absolute number of age-associated diseases such as dementia will increase. Evaluation of the suitability and intake of medication and pharmacological treatment is an important aspect of care for people with dementia, especially if they live at home. Regular medication reviews and systematic cooperation between physicians and pharmacists are not common in routine care. Medication management (MM), based on such a comprehensive home medication review could help to reduce drug-related problems and costs. The present article presents a medication management specifically for the application in the ambulatory setting and describes its implementation as part of a larger trial.A home medication review (HMR) and MM is implemented as part of the DelpHi study, a population based prospective, cluster-randomized controlled intervention study to test the efficacy and efficiency of the implementation of a collaborative care model in primary care.people with dementia (PWD) and their caregivers are recruited by the patient's general practitioner. Inclusion criteria are a positive screening result for dementia, living at home and regular intake of drugs. PWD are asked to specify their regular pharmacy which is asked to participate in the study, too.a comprehensive HMR is conducted as computer-assisted personal interview by specifically qualified Dementia Care Manager (DCM) at the people's home. It includes detailed information about drugs taken, their storage, administration, adherence and adverse events. The MM is conducted in cooperation between DCM, pharmacist and general practitioner and consists of a pharmaceutical evaluation, pharmaceutical recommendations and their application. Pharmacists are trained and provided with regularly updated information. The MM is designed to give information and recommendations concerning antidementia drugs, occurrence of drug related problems, intake of anticholinergic drugs, potentially clinically relevant drug-drug-interactions, adverse drug events and medication adherence.The DelpHi-approach for medication management employs comprehensive instruments and procedures in the primary care setting under routine care conditions, and this approach should be useful in improving pharmacotherapy as part of the comprehensive treatment and care for people with dementia.The trial is registered at ClinicalTrials.gov, number NCT01401582.
| S-EPMC3840668 | biostudies-literature
Project description:In a growing number of intervention studies, mobile phones are used to support self-management of people with Type 2 diabetes mellitus (T2DM). However, it is difficult to establish knowledge about factors associated with intervention effects, due to considerable differences in research designs and outcome measures as well as a lack of detailed information about participants' engagement with the intervention tool.To contribute toward accumulating knowledge about factors associated with usage and usability of a mobile self-management application over time through a thorough analysis of multiple types of investigation on each participant's engagement.The Few Touch application is a mobile-phone-based self-management tool for patients with T2DM. Twelve patients with T2DM who have been actively involved in the system design used the Few Touch application in a real-life setting from September 2008 until October 2009. During this period, questionnaires and semistructured interviews were conducted. Recorded data were analyzed to investigate usage trends and patterns. Transcripts from interviews were thematically analyzed, and the results were further analyzed in relation to the questionnaire answers and the usage trends and patterns.The Few Touch application served as a flexible learning tool for the participants, responsive to their spontaneous needs, as well as supporting regular self-monitoring. A significantly decreasing (P<.05) usage trend was observed among 10 out of the 12 participants, though the magnitude of the decrease varied widely. Having achieved a sense of mastery over diabetes and experiences of problems were identified as reasons for declining motivation to continue using the application. Some of the problems stemmed from difficulties in integrating the use of the application into each participant's everyday life and needs, although the design concepts were developed in the process where the participants were involved. The following factors were identified as associated with usability and/or usage over time: Integration with everyday life; automation; balance between accuracy and meaningfulness of data with manual entry; intuitive and informative feedback; and rich learning materials, especially about foods.Many grounded design implications were identified through a thorough analysis of results from multiple types of investigations obtained through a year-long field trial of the Few Touch application. The study showed the importance and value of involving patient-users in a long-term trial of a tool to identify factors influencing usage and usability over time. In addition, the study confirmed the importance of detailed analyses of each participant's usage of the provided tool for better understanding of participants' engagement over time.
| S-EPMC4114413 | biostudies-other
Project description:BackgroundSelf-care is a key component of current policies to manage long term conditions. Although most people with long-term health problems care for themselves within lay networks, consultation rates for long-term undifferentiated illness remain high. Promotion of self-care in these individuals requires an understanding of their own self-care practices and needs to be understood in the context of health care pluralism. The aim was to investigate the extent and nature of self-care practices in patients experiencing long term health problems, sources of information used for self-care, and use of other forms of health care (conventional health care and complementary and alternative medicine).MethodsThe study involved a cross-sectional community-based survey set in three general practices in South West England: two in urban areas, one in a rural area. Data were collected using a postal questionnaire sent to a random sample of 3,060 registered adult patients. Respondents were asked to indicate which of six long term health problems they were experiencing, and to complete the questionnaire in reference to a single (most bothersome) problem only.ResultsOf the 1,347 (45% unadjusted response rate) who responded, 583 reported having one or more of the six long term health problems and 572 completed the survey questionnaire. Use of self-care was notably more prevalent than other forms of health care. Nearly all respondents reported using self-care (mean of four self-care practices each). Predictors of high self-care reported in regression analysis included the reported number of health problems, bothersomeness of the health problem and having received a diagnosis. Although GPs were the most frequently used and trusted source of information, their advice was not associated with greater use of self-care.ConclusionsThis study reveals both the high level and wide range of self-care practices undertaken by this population. It also highlights the importance of GPs as a source of trusted information and advice. Our findings suggest that in order to increase self-care without increasing consultation rates, GPs and other health care providers may need more resources to help them to endorse appropriate self-care practices and signpost patients to trusted sources of self-care support.
| S-EPMC3143929 | biostudies-literature