Dataset Information

Experiences of community-dwelling older people with dementia participating in a person-centred multidimensional interdisciplinary rehabilitation program.

ABSTRACT:

Background

There is great need for development of feasible rehabilitation for older people with dementia. Increased understanding of this population's experiences of rehabilitation participation is therefore important. The aim of this study was to explore the experiences of community-dwelling older people with dementia participating in a person-centred multidimensional interdisciplinary rehabilitation program.

Methods

Sixteen older people with dementia were interviewed about their experiences of participation in a person-centred multidimensional interdisciplinary rehabilitation program. The program comprised assessments by a comprehensive team of rehabilitation professionals followed by a rehabilitation period of 16 weeks, including interventions based on individualized rehabilitation goals conducted with the support of the rehabilitation team. The rehabilitation was performed in the participants' homes, in the community and at an outpatient clinic, including exercise with social interaction in small groups offered twice a week to all participants. The interviews were conducted at the end of the rehabilitation period and analysed with qualitative content analysis.

Results

The analysis resulted in one overarching theme: Empowered through participation and togetherness and four sub-themes: Being strengthened through challenges; Gaining insights, motives, and raising concerns about the future; Being seen makes participation worthwhile; and Feelings of togetherness in prosperity and adversity. The participants increased their self-esteem by daring and coping in the rehabilitation. The insights about themselves and their condition motivated them to continue with their prioritized activities, but also raised concerns about how the future would play out. Collaboration in the group and being seen and acknowledged by staff strengthened their own motivation and self-efficacy.

Conclusion

According to community-dwelling older people with dementia, a person-centred multidimensional interdisciplinary rehabilitation program was experienced as viable and beneficial. The participants seemed empowered through the rehabilitation and expressed mostly positive experiences and perceived improvements. Providers of interdisciplinary rehabilitation programs for this group should consider aspects raised by the participants e.g. the positive experience of being challenged in both exercise and daily activities; the importance of being seen and feeling secure; the benefits and challenges of collaboration with others in the same situation; and the generation of new perspectives of current and future situation.

SUBMITTER: Sondell A

PROVIDER: S-EPMC8173830 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundSymptoms and complications of chronic obstructive pulmonary disease (COPD) can affect daily activities and quality of life, and patients with COPD require long-term follow-up by their general practitioner. Providing patients with or at risk of COPD practical skills and motivation to improve their self-management is important. On this background, an interdisciplinary follow-up program was designed based on the Guided Self-Determination counselling method to facilitate problem-solving and mutual decision-making between healthcare professionals and patients. The aim of the study was to explore patients and healthcare professionals` experiences with the Guided Self-Determination-program to investigate feasibility issues.MethodsA qualitative design was used to get insights in the experiences of receiving the Guided Self-Determination counselling program. In total, 13 patients with COPD (mean age 71.7 ± 7.7 years) 4 were current smokers, and 7 at risk of COPD (mean age 54.1 ± 9.9 years) all current smokers, received the Guided Self-Determination program. The researchers performed individual semi-structured telephone interviews after the 12 months Guided Self-Determination program with two patients at risk of COPD, four patients with COPD, three nurses, and five general practitioners. The intervention consisted of structured consultations with the nurse and patient in collaboration with the general practitioner at baseline and after 3, 6, and 12 months. The Guided Self-Determination method comprised facilitation of a mutual reflection process between the patient and the nurse to enhance self-management skills. Each consultation lasted for 60 min. The interviews were analysed using thematic analyses.ResultsTwo themes were identified: (1) A structured follow-up is challenging but motivating. (2) A counselling method that opens for conversation, but it requires resources.ConclusionsThe findings indicated that patients with or at risk of COPD experienced enhanced self-management skills after participating in a structured and systematic team-based follow-up in general practice with use of the Guided Self-Determination method. The regularity of the follow-up seemed to be important to succeed to help the patients making lifestyle changes to increase health benefits. However, the Guided Self-Determination method was experienced as time consuming among the general practitioners and nurses, and there are currently no available financial rates for this type of treatment in Norway which may be a barrier to further implementation.Trial registrationThe trial is registered in ClinicalTrials.gov (ID: NCT04076384).

Project description:IntroductionMealtime is a critical daily activity to ensure nutrition, hydration, function and socialisation. Interactions between staff and residents during mealtimes are complex and dynamic processes including verbal and/or nonverbal communication that can be positive/neutral or challenging. This study examined characteristics of and relationships between person-centred and task-centred care and positive/neutral and challenging mealtime behaviours in persons with dementia.MethodsThis study was a secondary behavioural analyses of videotaped mealtime observations (n = 110) involving 42 unique staff-resident dyads (29 staff and 25 residents with dementia) in nine nursing homes. The refined Cue Utilization and Engagement in Dementia mealtime video-coding scheme was used to code videos during 2019-2020. Dependent variables representing resident mealtime behaviours included positive verbal behaviours, positive/neutral nonverbal behaviours, functional impairments (nonverbal) and resistive behaviours (verbal and nonverbal). Independent variables were staff person-centred and task-centred approaches (verbal and nonverbal). Relationships between resident mealtime behaviours and staff approaches were examined using bivariate analysis and logistic regression.ResultsStaff person-centred verbal approaches were associated with resident positive verbal behaviours (OR = 1.38, 95% CI = 1.09-1.76), functional impairments (OR = 0.81, 95% CI = 0.66-1.00) and resistive behaviours (OR = 1.65, 95% CI = 1.18-2.31). Staff person-centred nonverbal approaches were associated with resident functional impairments (OR = 1.33, 95% CI = 1.02-1.74). Staff task-centred approaches were not associated with resident positive/neutral or challenging mealtime behaviours.ConclusionThis study characterised staff approaches and resident behaviours during mealtime care and provided preliminary support on associations between staff person-centred approaches and resident positive and challenging behaviours. Person-centred mealtime care practice is recommended by focusing on support of common, challenging behaviours and reinforcement of positive behaviours with adequate consideration of individual needs and preferences.

Project description:IntroductionKnowledge is missing on use of information and communication technology (ICT), for example, mobile phones/tablets in rehabilitation after stroke. F@ce 2.0 is a person-centred, interdisciplinary intervention supported by ICT. The components of F@ce 2.0 intend to increase performance in daily activities and participation in everyday life for patients with stroke and their significant others. Based on previous feasibility studies, a full-scale evaluation is planned in Sweden. The aim is to implement and evaluate F@ce 2.0, regarding performance of daily activities and participation in everyday life, in comparison with ordinary rehabilitation among persons who have had stroke and significant others. Second, to increase knowledge about how the programme leads to a potential change by studying the implementation process and mechanisms of impact.Methods and analysisTwelve rehabilitation teams (intervention n=7; control n=5) will recruit patients (n=160) who receive rehabilitation at home after stroke and their significant others. F@ce 2.0 is an 8-week intervention where patients, together with the team, formulate three activity goals regarding what they need and want to do in daily lives. The patients will receive short messages service (SMS) each morning reminding about goals, and in the evening to rate their performance during the day. Primary outcomes for patients: self-efficacy measured by the Self-Efficacy Scale; perceived performance in daily activities measured by the Canadian Occupational Performance Measure. Significant others: perceived caregiver burden measured by Caregiver Burden Scale. Qualitative interviews with team members delivering, patients receiving intervention and significant others will explore experiences of F@ce 2.0. A process evaluation applying a case-study design using mixed methods will be conducted.Ethics and disseminationApproved by the Swedish Ethical Review Authority, Stockholm. Knowledge will be created for using ICT for rehabilitation of people after stroke in self-selected activities. Dissemination will include peer-reviewed publications, presentations at conferences, and information to stakeholders.Trial registration number detailsNCT04351178 .

Project description:BackgroundThe World Health Organization claims that rehabilitation is important to meet the needs of persons with dementia. Rehabilitation programmes, however, are not routinely available. Person-centred, multidimensional, and interdisciplinary rehabilitation can increase the opportunities for older adults with dementia and their informal primary caregivers to continue to live an active life and participate in society. To our knowledge, staff team experiences of such rehabilitation programmes, involving older adults with dementia and their informal caregivers has not been previously explored.MethodsThe aim of this qualitative focus group study was to explore the experiences of a comprehensive staff team providing person-centred multidimensional, interdisciplinary rehabilitation to community-dwelling older adults with dementia, including education and support for informal primary caregivers. The 13 staff team members comprised 10 professions who, during a 16-week intervention period, provided individualised interventions while involving the rehabilitation participants. After the rehabilitation period the staff team members were divided in two focus groups who met on three occasions each (in total six focus groups) and discussed their experiences. The Grounded Theory method was used for data collection and analysis.ResultsThe analysis resulted in four categories: Achieving involvement in rehabilitation is challenging, Considering various realities by acting as a link, Offering time and continuity create added value, and Creating a holistic view through knowledge exchange, and the core category: Refining a co-creative process towards making a difference. The core category resembles the collaboration that the staff had within their teams, which included participants with dementia and caregivers, and with the goal that the intervention should make a difference for the participants. This was conducted with flexibility in a collaborative and creative process.ConclusionsThe staff team perceived that by working in comprehensive teams they could provide individualised rehabilitation in creative collaboration with the participants through interaction, knowledge exchange, time and continuity, coordination and flexibility, and a holistic view. Challenges to overcome were the involvement of the person with dementia in goal setting and the mediating role of the staff team members. The staff pointed out that by refinement they could achieve well-functioning, competence-enhancing and timesaving teamwork.

Project description:Rationale & objectiveDespite growing interest in individualizing care, routine dialysis processes, including the interdisciplinary plan of care, often fail to account for patient-identified priorities. To better align dialysis care with patient priorities and improve care planning experiences, we implemented a person-centered care plan program at a single clinic. We also sought to gain insight into key implementation considerations and areas for program improvement.Study design6-month quality improvement project with research substudy.Setting & participants49 hemodialysis patients and 14 care team members at a North Carolina dialysis clinic.Quality improvement activitiesImplementation of My Dialysis Plan, a person-centered care plan program.OutcomesParticipant perspectives and care plan meeting characteristics (quality improvement); pre- to postprogram change in patient-reported autonomy support, patient-centeredness of care, and dialysis care individualization (research).Analytical approachWe used the Consolidated Framework for Implementation Research to guide implementation and evaluation. We conducted pre-, intra-, and post-project interviews with clinic stakeholders (patients, clinic personnel, and medical providers) to identify implementation barriers, facilitators, and perceptions. We compared pre- and post-project care plan meeting content and patient-reported outcome survey scores.ResultsWe conducted 54 care plans with 49 patients. Overall, care teams successfully used My Dialysis Plan to elicit and link patient priorities to actionable aspects of dialysis care. Participants identified interdisciplinary team commitment, accountability, and the structured yet flexible meeting approach as key implementation elements. Throughout the project, stakeholder input guided program modifications (eg, implementation practices and resources) to better meet clinic needs, but follow-up on care plan-identified action items remained challenging. Among the 28 substudy participants, there was no difference in pre- to post-project patient-reported outcome survey scores.LimitationsSingle clinic implementation.ConclusionsMy Dialysis Plan has the potential to enhance dialysis care individualization and care plan experiences. Evaluation of program impact on patient-reported and clinical outcomes is needed.