scholarly journals A collaborative approach to exercise provision for people with Parkinson’s – a feasibility and acceptability study of the PDConnect programme

2021 ◽  
Vol 2 ◽  
pp. 29
Author(s):  
Julie Jones ◽  
Lyndsay Alexander ◽  
Elizabeth Hancock ◽  
Kay Cooper

Background: Exercise has been shown to be beneficial for people with Parkinson’s (PwP), slowing the rate of decline of motor and non-motor symptoms, with emerging evidence associating exercise with a neuroprotective effect. Current exercise provision is time-limited, and delivered in the absence of strategies to support long-term adherence to exercise. With a growing Parkinson’s population, there is a need to develop long-term sustainable approaches to exercise delivery. The primary aim of this study is to assess the feasibility and acceptability of a multicomponent intervention (PDConnect) aimed at promoting physical activity, and self-management for PwP. Methods: A convergent fixed parallel mixed methods design study will be undertaken. The study aims to recruit 30 PwP, who will be randomly allocated into two groups: (i) the usual care group will receive physiotherapy once a week for six weeks delivered via Microsoft Teams. (ii) The PDConnect group will receive physiotherapy once a week for six weeks which combines exercise, education and behaviour change interventions delivered by NHS Parkinson’s specialist physiotherapists via Microsoft Teams. This will be followed by 12 weekly sessions of group exercise delivered on Microsoft Teams by fitness instructors specially trained in Parkinson’s. Participants will be then contacted by the fitness instructors once per month for three months by video conferencing to support exercise engagement. Primary feasibility data will be collected during the study, with acceptability assessed via semi-structured interviews at the end. Secondary outcomes encompassing motor, non-motor and health and well-being measures will be assessed at baseline, at six, 18, and 30 weeks. Discussion: This pilot study will establish whether PDConnect is feasible and acceptable to PwP. This will provide a platform for a larger evaluation to assess the effectiveness of PDConnect at increasing exercise participation and self-management within the Parkinson’s Community. Trial registration: Registered on ISRCTN (ISRCTN11672329, 4th June 2020).

2020 ◽  
Vol 2 ◽  
pp. 29
Author(s):  
Julie Jones ◽  
Lyndsay Alexander ◽  
Elizabeth Hancock ◽  
Kay Cooper

Background: Exercise has been shown to be beneficial for people with Parkinson’s (PwP), limiting the rate of decline of motor and non-motor symptoms, with emerging evidence associating exercise with a neuroprotective effect. Current exercise provision is time-limited, and delivered in the absence of strategies to support long-term adherence to exercise. With a growing Parkinson’s population, there is a need to develop long-term sustainable approaches to exercise delivery. The primary aim of this study is to assess the feasibility and acceptability of a multicomponent intervention (PDConnect) aimed at promoting physical activity, and self-management for PwP. Methods: A convergent fixed parallel mixed methods design study will be undertaken. The study aims to recruit 30 PwP, who will be randomly allocated into two groups: (i) the usual care group will receive physiotherapy once a week for six weeks delivered via Microsoft Teams. (ii) The PDConnect group will receive physiotherapy once a week for six weeks which combines exercise, education and behaviour change interventions delivered by NHS Parkinson’s specialist physiotherapists via Microsoft Teams. This will be followed by 12 weekly sessions of group exercise delivered on Microsoft Teams by fitness instructors specially trained in Parkinson’s. Participants will be then contacted by the fitness instructors once per month for three months by video conferencing to support exercise engagement. Primary feasibility data will be collected during the study, with acceptability assessed via semi-structured interviews at the end. Secondary outcomes encompassing motor, non-motor and health and well-being measures will be assessed at baseline, at six, 18, and 30 weeks. Discussion: This pilot study will establish whether PDConnect is feasible and acceptable to PwP. This will provide a platform for a larger evaluation to assess the effectiveness of PDConnect at increasing exercise participation and self-management within the Parkinson’s Community. Trial registration: Registered on ISRCTN (ISRCTN11672329, 4th June 2020).


Author(s):  
Monica Sørensen ◽  
Karen Synne Groven ◽  
Bjørn Gjelsvik ◽  
Kari Almendingen ◽  
Lisa Garnweidner-Holme

Abstract Aim: The purpose of this study was to explore how patients with diabetes and multimorbidity experience self-management support by general practitioners (GPs), nurses and medical secretaries in Norwegian general practice. Background: Self-management support is recognised as an important strategy to improve the autonomy and well-being of patients with long-term conditions. Collaborating healthcare professionals (cHCPs), such as nurses and medical secretaries, may have an important role in the provision of self-management support. No previous study has explored how patients with diabetes and multimorbidity experience self-management support provided by cHCPs in general practice in Norway. Methods: Semi-structured interviews with 11 patients with type 1 diabetes mellitus (T1DM) or type 2 diabetes mellitus (T2DM) with one or more additional long-term condition were performed during February–May 2017. Findings: Patients experienced cHCPs as particularly attentive towards the psychological and emotional aspects of living with diabetes. Compared to GPs, whose appointments were experienced as stressful, patients found cHCPs more approachable and more likely to address patients’ questions and worries. In this sense, cHCPs complemented GP-led diabetes care. However, neither cHCPs nor GPs were perceived to involve patients’ in clinical decisions or goal setting during consultations.


2012 ◽  
Vol 27 (4) ◽  
pp. 385-391 ◽  
Author(s):  
Sarah E. Finlay ◽  
Michelle Earby ◽  
David J. Baker ◽  
Virginia S.G. Murray

AbstractThe immediate patterns of injury from explosions are well documented, from both military and civil experience. However, few studies have focused on less immediately apparent health consequences and latent effects of explosions in survivors, emergency responders and the surrounding community. This review aimed to analyze the risks to health following an explosion in a civil setting.A comprehensive review of the open literature was conducted, and data on 10 relevant military, civilian and industrial events were collected. Events were selected according to availability of published studies and involvement of large numbers of people injured. In addition, structured interviews with experts in the field were conducted, and existing national guidelines reviewed.The review revealed significant and potentially long-term health implications affecting various body systems and psychological well-being following exposure to an explosion. An awareness of the short- and long-term health effects of explosions is essential in screening for blast injuries, and identifying latent pathologies that could otherwise be overlooked in stressful situations with other visually distracting injuries and, often, mass casualties. Such knowledge would guide responsible medical staff in implementing early appropriate interventions to reduce the burden of long-term sequelae. Effective planning and response strategies would ensure accessibility of appropriate health care resources and evidence-based information in the aftermath of an explosion.Finlay SE, Earby M, Baker DJ, Murray VSG. Explosions and human health: the long-term effects of blast injury. Prehosp Disaster Med. 2012;27(4):1-7.


2018 ◽  
Vol 10 (3) ◽  
pp. 186 ◽  
Author(s):  
Helen Francis ◽  
Jenny Carryer ◽  
Jill Wilkinson

ABSTRACT INTRODUCTION The prevalence of long-term health conditions (LTCs) continues to increase and it is normal for people to have several. Lifestyle is a core feature of the self-management support given to people with LTCs, yet it seems to fail to meet their needs. From a larger study exploring the experiences of this group, this paper reports on the role of food and mealtimes, and the effect of the nutritional advice on the lives of people with several LTCs. METHODS The experiences of 16 people with several advanced LTCs were explored using multiple qualitative case studies. Over an 18-month period, contact with participants included monthly conversations, two longer, semi-structured interviews and one interview with their primary care clinicians. The data were analysed inductively using thematic analysis. RESULTS There was profound social, psychological and cultural significance of food to the participants. These aspects of food were then described using the Whare Tapa Wha model of health. The approach to food and nutrition participants experienced in health care was closely associated with conventional weight management. They found this advice largely irrelevant and therefore ineffective. DISCUSSION The pressure people with several LTCs experience during clinical encounters has perverse effects on wellbeing and reinforces an overall sense of failure. This research challenges the assumption that all people have the will, agency and income to follow the advice they receive about nutrition and exercise. Considering people’s needs using the Whare Tapa Wha model of health offers clinicians a framework to re-conceptualise the core features of self-management support and provide realistic, compassionate care that will optimise the quality of life for people with multiple LTCs.


2018 ◽  
Vol 42 (1) ◽  
pp. 38-48 ◽  
Author(s):  
Lisa Lewis

This article presents findings from a small-scale qualitative research study exploring the experiences of adoptive parents during adoption transitions – the time between when a match with a child is made until a number of months after placement. What happens during this period can have a bearing on the future success of the placement and long-term well-being of the child. The article seeks to explore the experiences of adoptive parents during this stage of the process in order for practitioners to become better informed about what can make transitions successful. Semi-structured interviews were conducted with nine parents to capture the narrative of their adoption transition experience. Thematic analysis of the conversations revealed five main themes: rigidity, scrutiny, support, overall reflections and the relationship with the foster carer. The findings suggest that the transition period was a significant but problematic stage in the adopters’ overall adoption journey. Considerable inconsistency in the approach taken to practice in this area affected their experiences. The research highlighted areas of practice which are out of sync with that recommended in the literature; the article concludes with recommendations for promoting consistency.


2021 ◽  
Vol 79 (1) ◽  
Author(s):  
Magnus Zingmark ◽  
Rosemarie Ankre ◽  
Sandra Wall-Reinius

Abstract Background Disengagement from outdoor recreation may diminish the positive benefits on health and well-being in old age. The purpose of this study is to present a contextual, theoretical, and empirical rationale for an intervention, aiming to promote continued engagement in outdoor recreation for older adults in a Swedish context. Methods The paper includes a contextualization of outdoor recreation in Sweden, a presentation of evidence on health benefits related to engagement in outdoor recreation, together with theoretical frameworks that may guide future intervention designs. To add empirical knowledge, a mixed methods approach was applied, including an empirical data collection based on a quantitative survey (n = 266) and individual semi-structured interviews with older adults (n = 12). Survey data were presented with descriptive statistics. Associations between disengagement from previously performed activities and age and gender was analyzed with Chi2 tests. Transcripts and handwritten notes from the interviews were analyzed qualitatively to identify key themes, as well as patterns and disparities among respondents. Results Outdoor recreation was rated as important/very important by 90% of respondents of the survey. The interviews highlighted that engagement in outdoor recreation aided respondents to keep fit but had also relevance in terms of identity, experiences, and daily routines. Outdoor recreation close to the place of residence was most common and walking was the most frequently reported activity. While 80% considered their health to be good/very good, disability and long-term diseases were common and during the previous year, more than half of all respondents had disengaged from activities previously performed. Reasons for disengagement were mainly related to health decline or that activities were too demanding but also due to social loss. The interviews indicated that continued engagement was important but challenging, and that disengagement could be considered as a loss or accepted due to changing circumstances. Conclusions In the design of an intervention aiming to promote engagement in outdoor recreation for older adults, the following features are proposed to be considered: person-centeredness, promoting functioning, addressing self-ageism, providing environmental support, promoting subjective mobility needs and adaptation to find new ways to engage in outdoor recreation.


2020 ◽  
Vol 8 (37) ◽  
pp. 1-248
Author(s):  
Fiona Lobban ◽  
Duncan Appelbe ◽  
Victoria Appleton ◽  
Golnar Aref-Adib ◽  
Johanna Barraclough ◽  
...  

Background Digital health interventions have the potential to improve the delivery of psychoeducation to people with mental health problems and their relatives. Despite substantial investment in the development of digital health interventions, successful implementation into routine clinical practice is rare. Objectives Use the implementation of the Relatives’ Education And Coping Toolkit (REACT) for psychosis/bipolar disorder to identify critical factors affecting uptake and use, and develop an implementation plan to support the delivery of REACT. Design This was an implementation study using a mixed-methods, theory-driven, multiple case study approach. A study-specific implementation theory for REACT based on normalisation process theory was developed and tested, and iterations of an implementation plan to address the key factors affecting implementation were developed. Setting Early-intervention teams in six NHS mental health trusts in England (three in the north and three in the south). Participants In total, 281 staff accounts and 159 relatives’ accounts were created, 129 staff and 23 relatives took part in qualitative interviews about their experiences, and 132 relatives provided demographic data, 56 provided baseline data, 21 provided data at 12 weeks’ follow-up and 20 provided data at 24 weeks’ follow-up. Interventions REACT is an online supported self-management toolkit, offering 12 evidence-based psychoeducation modules and support via a forum, and a confidential direct messaging service for relatives of people with psychosis or bipolar disorder. The implementation intervention was developed with staff and iteratively adapted to address identified barriers. Adaptations included modifications to the toolkit and how it was delivered by teams. Main outcome measures The main outcome was factors affecting implementation of REACT, assessed primarily through in-depth interviews with staff and relatives. We also assessed quantitative measures of delivery (staff accounts and relatives’ invitations), use of REACT (relatives’ logins and time spent on the website) and the impact of REACT [relatives’ distress (General Health Questionnaire-28), and carer well-being and support (Carer Well-being and Support Scale questionnaire)]. Results Staff and relatives were generally positive about the content of REACT, seeing it as a valuable resource that could help services improve support and meet clinical targets, but only within a comprehensive service that included face-to-face support, and with some additional content. Barriers to implementation included high staff caseloads and difficulties with prioritising supporting relatives; technical difficulties of using REACT; poor interoperability with trust information technology systems and care pathways; lack of access to mobile technology and information technology training; restricted forum populations leading to low levels of use; staff fears of managing risk, online trolling, or replacement by technology; and uncertainty around REACT’s long-term availability. There was no evidence that REACT would reduce staff time supporting relatives (which was already very low), and might increase it by facilitating communication. In all, 281 staff accounts were created, but only 57 staff sent relatives invitations. In total, 355 relatives’ invitations were sent to 310 unique relatives, leading to the creation of 159 relatives’ accounts. The mean number of logins for relatives was 3.78 (standard deviation 4.43), but with wide variation from 0 to 31 (median 2, interquartile range 1–8). The mean total time spent on the website was 40.6 minutes (standard deviation 54.54 minutes), with a range of 0–298 minutes (median 20.1 minutes, interquartile range 4.9–57.5 minutes). There was a pattern of declining mean scores for distress, social dysfunction, depression, anxiety and insomnia, and increases in relatives’ well-being and eHealth literacy, but no changes were statistically significant. Conclusions Digital health interventions, such as REACT, should be iteratively developed, evaluated, adapted and implemented, with staff and service user input, as part of a long-term strategy to develop integrated technology-enabled services. Implementation strategies must instil a sense of ownership for staff and ensure that they have adequate training, risk protocols and resources to deliver the technology. Cost-effectiveness and impact on workload and inequalities in accessing health care need further testing, along with the generalisability of our findings to other digital health interventions. Limitations REACT was offered by the same team running the IMPlementation of A Relatives’ Toolkit (IMPART) study, and was perceived by staff and relatives as a time-limited research study rather than ongoing clinical service, which affected engagement. Access to observational data was limited. Trial registration Current Controlled Trials ISRCTN16267685. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 37. See the NIHR Journals Library website for further project information.


2019 ◽  
pp. 174239531986943 ◽  
Author(s):  
Stephen Hughes ◽  
Sophie Lewis ◽  
Karen Willis ◽  
Anne Rogers ◽  
Sally Wyke ◽  
...  

Objectives Health professional-led group programmes are a common form of long-term condition self-management support. Much research has focused on clinical outcomes of group participation, yet there is limited research on how group participants perceive and experience the support they receive. We aim to identify the different types of support that participants receive from both facilitators and other participants, and how they value this support. Methods Semi-structured interviews were conducted with 20 participants taking part in a self-management group programme for a long-term condition (obesity, type 2 diabetes or chronic obstructive pulmonary disease). Data pertaining to support types were deductively identified through a social support framework prior to interpretive thematic analysis. Results Participants identified information and emotional support from both facilitators and other participants as complementary yet distinct. Facilitators’ support came from professional training and other participants’ support reflected the contextual, lived experience. Professional interactions were prioritised, constraining opportunities for participant–participant support to be received and exchanged. Discussion We identified a key gap in how self-management support is enacted in groups. Engaging participants to share experiential knowledge will make group support more relevant and mutually beneficial to participants living with a long-term condition.


Author(s):  
Kofi Awuviry-Newton ◽  
Jacob Oppong Nkansah ◽  
Abraham Newton ◽  
Kwamina Abekah-Carter

This study explores older people’s long-term care experiences during the COVID-19 pandemic in Ghana. A qualitative descriptive approach employing semi-structured interviews was used to collect data from 15 older people from Southern Ghana. Analysis of interview data resulted in five interrelated themes: (1) sources and type of long-term care; (2) older people’s satisfaction with the long-term care received; (3) changes in their long-term care; (4) feelings of neglect regarding long-term care; and (5) older people’s resilience in long-term care. The sustainability of long-term care depends on the state’s ability to devise innovative long-term care policies and programmes to promote older people’s and their carers’ well-being.


2019 ◽  
Vol 27 (5) ◽  
pp. 1187-1200 ◽  
Author(s):  
Anna-Henrikje Seidlein ◽  
Ines Buchholz ◽  
Maresa Buchholz ◽  
Sabine Salloch

Background Concepts of health have been widely discussed in the philosophy and ethics of medicine. Parallel to these theoretical debates, numerous empirical research projects have focused on subjective concepts of health and shown their significance for individuals and society at various levels. Only a few studies have so far investigated the concepts of health of non-professionals and professionals involved in long-term home care and discussed these empirical perspectives regarding moral responsibilities. Objectives To identify the subjective concepts of the health of non-professionals (care recipients, informal caregivers) and professionals (registered nurses) involved in long-term home care and to discuss them against the background of existing normative guidelines addressing non-professionals and professionals’ responsibilities and rights concerning health. Research design A qualitative design was chosen to explore subjective concepts of health. Data were collected by semi-structured interviews; content analysis was applied according to Mayring. Participants and research context Twenty-eight interviews were conducted with non-professionals and professionals in long-term home care arrangements in Northern Germany. Ethical considerations Ethics approval was obtained from the Institutional Review Board at the University Medicine Greifswald (BB123/16). Findings Non-professionals and professionals consider health as a capability that enables them to participate in social activities and live their own lives according to their preferences. The former regard health particularly as a feeling and an attitude, the latter as the absence of disease with a focus on mental and emotional well-being. Both groups highlight the unsurpassable value of health and the personal responsibility for it. Discussion Normative guidelines applicable to practice in long-term home care discuss responsibilities and rights unevenly and raise several problems regarding non-professionals and professionals’ subjective concepts of health. Conclusion Individuals’ concepts of health are relevant for the subsequent interpretation of rights and responsibilities and should, thus, be reflected upon to address health-related needs effectively.


Sign in / Sign up

Export Citation Format

Share Document