Abstract
Parkinson’s Disease (PD) affects over 500,000 Americans, causing symptoms like tremors and stiffness. Informal caregivers, often family or friends, play a critical role in providing support, which includes emotional support, assistance with daily activities, and medication management. However, this caregiving is emotionally and physically taxing, leading to stress, burnout, and adverse effects on mental health. Online peer support groups, especially on platforms like Reddit, have become essential for caregivers, allowing them to connect virtually and share experiences, overcoming geographical and time constraints and reluctance to engage in person. This study aims to explore the specific needs and challenges faced by PD caregivers in these online communities. It examines the types of information they seek, the responses they receive, and the range of emotions they experience. By understanding these aspects, the research seeks to enhance the support dynamics and emotional wellbeing within these virtual support networks.
Introduction
Parkinson’s Disease (PD) is a progressive neurological disorder characterized by symptoms such as tremors, stiffness, and difficulty with balance and coordination, leading to a significant decline in quality of life for patients (Dorsey et al., 2018; Jankovic, 2008; Lees et al., 2009). As per the US Department of Health and Human Services, currently, there are over 50,000 Americans diagnosed with PD (National Institute of Neurological Disorders and Stroke, 2023). Informal caregivers, often family members or close friends who provide various forms of assistance, including emotional support, help with activities of daily living, and medication management (Geerlings et al., 2023). However, the caregiving journey can be emotionally and physically taxing, placing considerable burdens on informal caregivers (Schulz & Sherwood, 2008). The caregiving responsibilities can lead to stress, burnout, and adverse effects on caregivers’ mental health and overall well-being (Read et al., 2023).
Peer support groups have emerged as resources for informal caregivers, providing a space to share experiences, seek advice, and find emotional support (Reinhard et al., 2008). In-person support groups have been widely recognized for their positive impact on caregivers’ emotional health by providing coping mechanisms to deal with the stress associated with caregiving (Gerritzen et al., 2023; Jablotschkin et al., 2022; Litzelman et al., 2014; Reinhard et al., 2008). However, in-person support groups can have their own set of challenges. Caregivers may face challenges accessing these settings due to geographical or time constraints (Gerritzen et al., 2023) or a reluctance to share personal experiences in person (Jablotschkin et al., 2022). Online peer support groups offer a unique solution to these challenges by providing a platform for caregivers to connect virtually. Reddit is one such social media platform that hosts specific subreddits dedicated to Parkinson’s support. These virtual platforms have become popular hubs for caregiver communities to connect and seek support (Gerritzen et al., 2022; Narasimha et al., 2019; Scharett et al., 2017). Although past research has focused on the effect of peer support groups on caregivers’ experiences (Geerlings et al., 2023; Gerritzen et al., 2022, 2023; Litzelman et al., 2014; Reinhard et al., 2008), there is a need to understand the specific needs and challenges faced by caregivers of PD patients on online peer support groups. This study aimed to answer the following research questions:
Method
Search Strategy
We utilized the Sprinklr data-gathering software to extract data from Reddit between July 11 and July 13, 2023. Our strategy included searching Reddit using four key phrases: “Parkinson’s Disease,” “Informal caregivers,” “Peer support groups,” and “Needs of caregivers.” We also included synonyms and terms related to our primary keywords to broaden our search and ensure we captured a wide range of relevant discussions.
Data Collection
Our initial query returned 110 posts. To refine our dataset to those most relevant to our study, we removed posts that were not directly related to the needs of informal caregivers, as well as duplicates and posts in languages other than English. This refinement process resulted in 64 posts. Further, by analyzing comments and employing a snowballing method, where further relevant posts were discovered by examining user comments on the initial dataset, we added 59 additional posts, bringing our total to 123 posts. To proceed with our analysis, we randomly selected 100 of these posts using a random number generator, alongside the examination of 1,363 comments linked to these posts. Figure 1 shows the data collection process.
Data collection process.
Analysis
Content from 100 posts and 1,363 comments on Reddit was categorized into distinct themes. Some content was uniquely labeled as “Others” or “Combined” for not fitting specific categories or spanning multiple ones. Accuracy was ensured through independent coding by five coders. The Linguistic Inquiry and Word Count (LIWC) software was used to analyze the tone and emotion to distinguish between negative and positive tones.
Results
Needs of Informal Caregivers on Reddit
The analysis of 100 posts highlighted that informal caregivers primarily seek emotional support (n = 26), with over half of these expressing concerns about financial issues, caregiver burnout, and communication challenges with PD patients. Discussion on medication (n = 13), particularly Levodopa, and questions about disease progression (n = 17) and symptom management (n = 6) were also prevalent. Caregivers shared personal experiences and advice, especially in caregiving techniques (n = 15) and support services (n = 14), indicating a strong need for emotional and practical support in managing PD care. Some of the posts were categorized under the combined category (n = 5) while the remaining posts were labeled as others (n = 4). Posts labeled as other predominantly provided information on coping with family-related stress in families with PD patients. Figure 2 shows the categorization of the posts analyzed.
Categorization of posts.
Responses Received by Informal Caregivers
The analysis of 1,363 comments revealed that personal experiences were the most common responses (22.2%), indicating a community-oriented approach to support. Posts on symptom management received comments that included practical advice (16%) and personal experiences, suggesting that responders are keen to share actionable insights based on personal experiences. Furthermore, 11% of the comments shared information about PD, enhancing the community’s knowledge base. Emotional support was the focus of 7% of the comments, contributing to a supportive and empathetic online environment. Another 7% of the comments addressed problem-solving, showcasing the community’s proactive approach to overcoming PD-related challenges. Encouragement and validation were also significant, with 5% of the comments aiming to uplift and affirm individuals, further cementing the sense of community and support among caregivers. Figure 3 shows the categorization of the comments analyzed.
Categorization of comments.
LIWC Tone Score Analysis
The tone analysis of posts using LIWC showed an average score of 38.4, indicating a predominantly negative tone among the posts. Sixty-eight percent of posts were negative, primarily expressing feelings of frustration.
Discussion
This analysis reveals that social media channels like Reddit are being used as a platform for informal caregivers of PD patients seeking support, largely facilitated by the anonymity the platform offers. This anonymity encourages users to freely express their emotions and seek help without fear of judgment, a phenomenon supported by previous research indicating that anonymity can significantly lower barriers to sharing personal feelings (Zhang & Kizilcec, 2014). The majority of posts involved users expressing their caregiving concerns, indicating that Reddit is being used as an online support group where individuals feel at ease sharing their personal challenges. The findings show that most interactions involved sharing personal experiences and practical advice. This suggests that communal knowledge and support are important for dealing with the complicated aspects of caregiving and emotional challenges. It also points out how important personal stories are in building a supportive community.
The emphasis on shared experiences helps caregivers overcome the challenges associated with caregiving. The study showed a significant need for financial and practical support among caregivers, emphasizing the role of support groups in offering pragmatic and meaningful advice. Additionally, it brought attention to the need for detailed information on Levodopa, a common medication for Parkinson’s Disease, underlining the importance of knowledge exchange about the use of medications and their side effects.
The study findings highlight the necessity for interventions to aid caregivers by streamlining their access to pertinent information and enhancing online safety through content moderation. This need is derived from observations that caregivers extensively seek practical support and information, particularly regarding medication management and symptom control, as evidenced by their focus on Levodopa. Additionally, the prevalence of personal stories and advice sharing points to the need for reliable, easily accessible platforms where caregivers can find and exchange information safely without the risk of misinformation or exposure to harmful content. These insights collectively point toward the development of targeted interventions that not only make information more accessible but also ensure a safe, supportive online environment for caregivers.
Limitations
This study has limitations. The analysis was confined to the top 100 Reddit posts, which might not capture the full spectrum of caregiver experiences. Results might vary if a larger set of data were considered. Additionally, the data was collected over a short period, and analyzing posts from different times might yield different insights.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
