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Background:
Parkinson disease (PD) significantly impacts the lives of people with the diagnosis and their families. In addition to the physical symptoms, living with PD also has an emotional impact. This can result in withdrawal from social roles, increasing the risk for social isolation and loneliness. Peer support is a way to stay socially conne...
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Purpose:
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Citations
... Another key benefit identified across both data sets was the application of remote platforms as a means of social connection. This is consistent with literature exploring peer support online (43,44). It is worth noting that some participants reported mixed experiences around social connection and remote platforms, with some reflecting that they became more aware of the physical distance between themselves and othersthis seemed particularly salient when individuals expressed a desire for physical connection (e.g., wanting to hug) or when ending the call and filling the void of suddenly being alone. ...
Introduction
COVID-19 necessitated a rapid move from face-to-face services to remote care for eating disorders/eating distress (EDs). This study explores the advantages and challenges of remote care, identifying future implications for service provision. Remote care has been considered in the broadest of terms, including therapeutic care (e.g., Cognitive Behavioural Therapy, peer support, forums, one-to-one and group care options).
Methods
Using a mixed methods approach, data were collected from 211 people with lived experience of EDs (PWLE), with and without formal diagnosis. 27 participants took part in semi-structured interviews/workshops and a further 184 participants took part via an online survey. Participants reported on their ED status, the impact of the pandemic on symptoms, the benefits, and challenges of remote care (and type of support accessed), and any reasons for not accessing support. Participants were invited to make future care recommendations.
Results
ED symptoms were reported as worsening during the pandemic with contributing factors including isolation, lack of routine, negative emotions, and feeling like the external situation was outside of one’s control. Remote care was positively attributed to increased flexibility and facilitation of social connection. Identified barriers to access included lack of awareness about support availability, digital access/literacy, and competing commitments. Further challenges included approaches being perceived as too clinical (e.g., ED information and support presented using clinical language and/or limited to support within medical care settings, without acknowledging the broader context of disordered eating), uncertainty around remote care quality, and concerns that remote platforms may facilitate masking of symptoms. Participants reported distress caused by online platforms where self-view is the default during video calls. They expressed a need for more holistic approaches to remote care, including: “real stories” of recovery, and hybrid (online and offline) options for greater flexibility and widening of access and choice. Participants also expressed a need for appropriate digital literacy training.
Discussion
Future recommendations emphasise user-centred holistic and hybrid approaches to ED remote support, with training to address digital literacy barriers and facilitate user control of platform functionalities (e.g., self-view). This study underscores the need for continued remote care with a focus on inclusivity and user empowerment.
... Research suggests that online peer support can be beneficial for people with chronic (18) or neurodegenerative (19,20) conditions. Research on online peer support for people with ALS is growing and suggests it could be beneficial (see Stewart Loane and D'Alessandro (21) and Caron and Light (22) for examples). ...
... A systematic database search was conducted in April 2020 and updated in June 2022. The search was part of a wider appraisal of the literature on different chronic neurodegenerative conditions (19,20). Six databases were searched: CINAHL, Cochrane Library, Embase Medline, PsycINFO, Scopus, and Web of Science. ...
... Additionally, this review may over represent positive aspects of online peer support, since people who are active on an online platform tend to be the ones who enjoy it, only one study reported on the negatives and potential challenges of online peer support for people with ALS (22), and we could not include views and experiences of those who are unable to use or stopped using online peer support. Finally, with the qualitative content analysis methodology the findings can still remain dependent on the researchers' interpretation (19) ...
Background
Amyotrophic Lateral Sclerosis (ALS) significantly impacts the lives of people with the diagnosis and their families. A supportive social environment is important for people with ALS to adopt effective coping strategies and health behaviours, and reduce depressive symptoms. Peer support can provide a supportive social environment and can happen in-person and online. Advantages of online peer support are that people can engage from their own home, at their own time and pace, and that it offers a variety of different platforms and modes of communication.
Objectives
To (1) explore the benefits and challenges of online peer support for people with ALS, and (2) identify successful elements of online peer support for people with ALS.
Methods
The method selected for this systematic review was a narrative synthesis. Six databases were systematically searched in April 2020 for articles published between 1989 and 2020. The search was updated in June 2022. The quality of the included studies was assessed with the Critical Appraisal Skills Programme qualitative research checklist.
Results
10,987 unique articles were identified through the systematic database search. Of those, 9 were included in this review. One of the main benefits of online peer support was that people could communicate using text rather than needing verbal communication, which can be challenging for some with ALS. Successful elements included using profile pages and graphics to identify others with similar or relevant experiences. Challenges included ALS symptoms which could make it difficult to use technological devices.
Conclusions
Peer support can provide a non-judgmental and supportive environment for people with ALS, in which they can exchange experiences and emotional support, which can help people in developing adaptive coping strategies. However, ALS symptoms may make it more difficult for people to use technological devices and engage in online peer support. More research is needed to identify what kind of specific barriers people with ALS experience, and how these could be overcome.
... Participants also emphasized unique benefits of online platforms, such as not having to travel, the opportunity for support right in the moment when they needed it, and not having all the stimulation that people may have when they are in a room full of people. These findings are in line with previous research on online peer support for people with chronic conditions [24], Parkinson's disease [25], and Multiple Sclerosis [26]. ...
People with Young Onset Dementia (YOD) can be hesitant to engage with online peer support. This work aims to explore (1) why people are hesitant to engage in online peer support, (2) how to get more people involved in online peer support, and (3) what makes online peer support work well. Nine interviews with people with YOD were conducted on MS Teams. Participants were recruited through purposive sampling. Data were analysed thematically. Reasons for being hesitant to engage with online peer support include being unsure what to expect and concerns about seeing others in more advanced stages of dementia. Additionally, it can be difficult to identify groups that suit one’s needs and interests. Group facilitators of online peer support groups should provide a detailed description of their group so that people can better assess whether the group would suit them. The insights obtained from this study will be used to develop a Best Practice Guidance on online peer support for people with YOD. Moreover, the findings can be useful for further research exploring how to support people with dementia in general in accessing online health and social care services.
... ship approach has been used in other interventions for long-term conditions [41]. Peer support offers unique benefits from shared lived experiences [42]. Nevertheless, several potential barriers exist to accessing peer support [42]. ...
... Peer support offers unique benefits from shared lived experiences [42]. Nevertheless, several potential barriers exist to accessing peer support [42]. This is possibly reflected in the participant's low feasibility rating of the cluster. ...
Background: Anxiety, a common symptom of Parkinson’s disease (PD), results in reduced life quality, reduced participation in meaningful roles and daily activities, and increased health burden. There are no evidence-based interventions to reduce the impact of anxiety in PD on participation. Objective: This study aimed to identify the key components required for the co-production of an occupation- and community-based intervention for people with PD-related anxiety. Methods: A participatory mixed-methods research study was conducted using online Group Concept Mapping methodology that included five stages: brainstorming, idea synthesis, sorting activity, rating activity, and analysis. A cluster map, pattern match, and ‘go-zone’ charts were created through multivariate statistical analysis based on participants’ responses. The stages were guided by questions generated by the research team working with stakeholders. Results: Eighty-three people participated, with 64 taking part in more than one activity. Participants included people with PD (n = 72), care partners (n = 6), and occupational therapists (n = 5). The final map contained 119 statements with eight clusters (stress value 0.252): exercise, lifestyle changes, self-help, coping, access to information, professional help, peers and groups, support from others. Significant agreement existed between the importance and feasibility rating activities (r = –0.07). ‘Go-zone’ charts highlighted the priority statements for intervention development. Conclusions: This novel participatory study highlighted priority components that provide starting points for future development of an occupation- and community-based intervention for people with PD-related anxiety.
... To date, most ICT-based solutions designed for PD have focused on monitoring the disease and evaluating motor symptoms to enhance treatment (e.g., Kim et al. 2018;Memedi et al. 2018). Some studies have examined online discussion forums for PwPs (Attard and Coulson 2012;Gerritzen et al. 2022). Further, some have developed rehabilitation therapy tools or virtual support groups to enhance the quality of life and well-being for PwPs (Pedreira et al. 2013;Subramanian 2020). ...
... Research has shown that online support groups, whether hosted on dedicated websites or through Facebook groups can help PwPs to maintain social connections, increase awareness of PD, and engage in supportive interactions with other PwPs (Gerritzen et al. 2022). PD discussion forums have also enabled PwPs to form friendships with other individuals who share the condition (Attard and Coulson 2012). ...
... However, discussion forums and online support groups facilitated interactions mostly among PwPs and in some cases facilitated communication with carers and healthcare professionals (e.g., Boulos et al. 2015;Subramanian 2020). Additionally, some of the PD symptoms like tremor make it challenging for PwPs to use technology solutions effectively (Gerritzen et al. 2022). PwPs also face challenges in participating in in-person interactions due to physical limitations such as fatigue and mobility issues, as well as fear or anxiety related to their condition (Ahn et al. 2022). ...
Persons with Parkinson’s disease (PwPs) may have difficulty participating in social activities due to motor and non-motor symptoms that may lead to social isolation and loneliness. This paper addresses how to manage social isolation and loneliness among PwPs using digital solutions. Information and Communication Technologies (ICT) have the potential to address social isolation and loneliness, but there are no current solutions that specifically target these issues among PwPs. In this paper, we present an ongoing project based on design science research (DSR) combined with a user-centered approach to identify challenges, requirements, and design objectives. The empirical work includes data from interviews and focus groups with PwPs and healthcare professionals. Based on the empirical material, we formulated design principles on identified challenges and requirements, which were instantiated into a high-fidelity prototype. This initial cycle serves as a foundation for ongoing improvements and evaluations in a continuous DSR process.
... As PD is a chronic condition that progressively worsens physical and mental function, loneliness is also likely to be an issue. While some previous studies emphasize the importance of social aspects in people with PD (PwPD), loneliness has not been extensively studied previously (12)(13)(14)(15). ...
Background
Loneliness is a growing issue for public health in an aging society. However, there is a lack of research on loneliness in people with Parkinson’s disease (PwPD).
Methods
We analyzed cross-sectional and longitudinal data from wave 5 ( N = 559 PwPD) and 6 ( N = 442 PwPD) from the Survey of Health, Ageing and Retirement in Europe (SHARE). Loneliness was assessed using the three-item version of the Revised UCLA Loneliness Scale. Descriptive statistics, group comparisons, multiple linear regressions, and generalized estimating equation analysis were performed to explore loneliness prevalence, its relationship with other factors, and its impact on Quality of Life (QoL) in PwPD.
Results
Depending on the used cut-off, the prevalence of loneliness in PwPD ranged from 24.1 to 53.8%. These prevalences were higher compared to people without PD. Loneliness was mainly linked to decreased functional abilities, weaker grip strength, more symptoms of depression, and country of residence. Loneliness was also associated with current QoL and predicts future QoL in PwPD, highlighting its impact on well-being.
Conclusion
Addressing loneliness could potentially improve QoL for PwPD, making it a modifiable risk factor that clinicians and policy-makers should consider.
... 32 This is similar to findings on online peer support for people with Parkinson disease. 42 Steadman and Pretorius 36 found that even nonactive members of a Facebook group felt connected, and Davis and Boellstorff 43 found that online peer support could be particularly helpful for people who live in rural areas. The opportunity to join from the comfort of one's own home is unique. ...
... This is a common limitation of research into online peer support. 42 Finally, physical symptoms associated with MS may limit access to online peer support. Although 1 study mentioned this issue, 36 this review does not include the perspectives of those who cannot or do not want to use online peer support. ...
BACKGROUND
People with multiple sclerosis often experience depression and anxiety, negatively affecting their quality of life, especially their social life. Peer support, whether in person or online, could improve social connection and coping. Online peer support allows people to engage from their home at a time that suits them. We sought to explore the benefits and challenges of online peer support and to identify successful elements of online peer support for people with multiple sclerosis.
METHODS
Using the narrative synthesis method, 6 databases were searched in April 2020 for articles published between 1989 and 2020; the search was updated in May 2022. The quality of the included studies was assessed using the Critical Appraisal Skills Programme qualitative research checklist and the Downs and Black checklist.
RESULTS
Of 10,987 unique articles identified through the database search, 11 were included. Benefits of online peer support included sharing information and experiences and emotional support. Successful elements included having a dedicated space to save information and the convenience of online peer support. Challenges included verification of information and the lack of nonverbal communication.
CONCLUSIONS
Online peer support can help those unable to access in-person support groups and can reduce the risk of social isolation. However, multiple sclerosis symptoms may make it difficult to use technological devices. Research is needed to further explore potential barriers to online peer support.
Background:
Parkinson disease (PD) is a complex, noncurable, and progressive neurological disease affecting different areas of the human nervous system. PD is associated with both motor and nonmotor symptoms, which negatively affect patients’ quality of life and may cause changes in socialization such as intentional social withdrawal. This may further lead to social isolation and loneliness. The use of information and communication technology (ICT) plays an important role in managing social isolation and loneliness. Currently, there is a lack of research focusing on designing and developing ICT solutions that specifically address social isolation and loneliness among people living with PD.
Objective:
This study addresses this gap by investigating barriers and social needs in the context of social isolation, loneliness, and technology use among people living with PD. The insights gained can inform the development of effective ICT solutions, which can address social isolation and loneliness and improve the quality of life for people living with PD.
Methods:
A qualitative study with 2 phases of data collection were conducted. During the first phase, 9 health care professionals and 16 people living with PD were interviewed to understand how PD affects social life and technology use. During the second phase, 2 focus groups were conducted with 4 people living with PD in each group to gather insights into their needs and identify ways to manage social isolation and loneliness. Thematic analysis was used to analyze both data sets and identify key themes.
Results:
The results showed that the barriers experienced by people living with PD due to PD such as “fatigue,” “psychological conditions,” “social stigma,” and “medication side effects” affect their social life. People living with PD also experience difficulties using a keyboard and mouse, remembering passwords, and navigating complex applications due to their PD-related physical and cognitive limitations. To manage their social isolation and loneliness, people living with PD suggested having a simple and easy-to-use solution, allowing them to participate in a digital community based on their interests, communicate with others, and receive recommendations for social events.
Conclusions:
The new ICT solutions focusing on social isolation and loneliness among people living with PD should consider the barriers restricting user’s social activities and technology use. Given the wide range of needs and barriers experienced by people living with PD, it is more suitable to adopt user-centered design approaches that emphasize the active participation of end users in the design process. Importantly, any ICT solution designed for people living with PD should not encourage internet addiction, which will further contribute to the person’s withdrawal from society.
Objective
A diagnosis of Parkinson's often leads to uncertainty about the future and loss of perceived control. Peer support may offer a means to address these concerns and promote self-management.
Design
A programme evaluation of the feasibility and potential effects of ‘First Steps’, utilising a pragmatic step wedge approach. Comparing First Steps (intervention) to (control) conditions. Setting: In the community at four sites in southern England. Participants: Newly diagnosed (≤ 12months) people with Parkinson's. Intervention: First Steps was a 2-day peer-conceived, developed and led intervention to support self-management. Main measures: At 0, 12 and 24 weeks anxiety and depression (Hospital, Anxiety and Depression Scale, HADS), daily functioning (World Health Organisation Disability Assessment Schedule, WHODAS), physical activity, quality of life (EQ5D), carer strain and service utilisation were assessed.
Results
Between February 2018 and July 2019, 36 participants were enrolled into intervention and 21 to control conditions, all were included in statistical analysis. Lost to follow up was n = 1 (intervention) and n = 1 adverse event was reported (control, unrelated). Of the 36 allocated to the intervention n = 22 participants completed both days of First Steps during the study period. Completion of outcome measures was >95% at 24 weeks. Small effects favouring the intervention were found for HADS (odds ratio (OR) = 2.06, 95% confidence interval (CI) 0.24:17.84), Carer Strain Index (OR = 2.22, 95% CI 0.5:9.76) and vigorous ( d = 0.42, 95% CI −0.12:0.97) and total physical activity ( d = 0.41, 95% CI −0.13:0.95). EQ5D, WHOSDAS and service utilisation, was similar between groups.
Conclusions
First Steps was feasible and safe and we found potential to benefit physical activity, mental health and carer strain. Further research with longer-term follow up is warranted.
