Exploring the use of a Facebook-based support group for caregivers of children and youth with complex care needs (Preprint)

2021 ◽  
Author(s):  
Katherine Kelly ◽  
Shelley Doucet ◽  
Alison Luke ◽  
Rima Azar ◽  
William Montelpare
Keyword(s):  
Support Groups ◽  
Support Group ◽  
Online Survey ◽  
Children And Youth ◽  
Advisory Council ◽  
Support Needs ◽  
Complex Care ◽  
Care Needs ◽  
Group Members ◽  
Complex Care Needs

BACKGROUND Caregivers of children and youth with complex care needs (CCN) require substantial support to ensure the well-being of their families. Online peer-to-peer (P2P) support groups present an opportunity for caregivers to seek and provide timely informational and emotional support. Despite the widespread use of social media for health-related support across diverse patient and caregiver populations, it is unclear how caregivers of CCN use and potentially benefit from these groups. OBJECTIVE The aim of this study was to explore the use of an online P2P support group for caregivers of children and youth with CCN and investigate factors related to its sustained use by members. METHODS The study sample consisted of individuals who joined a closed Facebook group and analysis of content published to the group. In Phase 1, a Facebook group was developed in consultation with a patient and family advisory council and members were recruited to the group. Phase 2 of this research consisted of an observation period during which posts and related interactions (i.e., likes, loves, and comments) by members were collected. In Phase 3, an online survey was distributed, and semi-structured interviews were conducted with a sub-sample of group members; survey and interview data were analyzed using thematic analysis. RESULTS A total of 108 caregivers joined the Facebook group between October 2020 and March 2021. There were 93 posts with 405 comments and 542 associated interactions (448 likes and 94 loves); 37 of these posts were made by group members and 56 by moderators. An online survey was completed by a sub-sample of 39 members and 14 members participated in interviews. Content analyses of posts by members revealed inquiry (46%), informational (40%), and emotional posts (11%) to be most common. Emotional posts received the greatest number of interactions (x̅ =24.5). Five themes emerged from interviews related to the use of the group and mediating factors of interactions between group members: 1) resource for information; 2) altruistic contribution; 3) varying level of engagement; 4) growing activity in the group; and 5) moderators as contributing members. CONCLUSIONS These findings demonstrate that caregivers of children and youth with CCN seek geographic-specific P2P support groups to meet informational and social support needs. This study contributes to the knowledge of how caregivers use Facebook groups to meet their support needs through moderate and passive engagement.

Experiences, motivations, and perceived impact of participation in a Facebook-based support group for caregivers of children and youth with complex care needs (Preprint)

2021 ◽  
Author(s):  
Katherine Kelly ◽  
Shelley Doucet ◽  
Alison Luke ◽  
Rima Azar ◽  
William Montelpare
Keyword(s):  
Support Groups ◽  
Support Group ◽  
Sense Of Community ◽  
Online Survey ◽  
Children And Youth ◽  
Complex Care ◽  
Care Needs ◽  
Community Belonging ◽  
Perceived Impact ◽  
Complex Care Needs

BACKGROUND Caregivers of children and youth with complex care needs (CCN) often require considerable support to ensure the well-being of their families. Social media presents an opportunity to better support caregivers through computer-mediated communication for social support. Peer-to-peer (P2P) support groups are one way that caregivers are accessing needed support; however, the impact that participation in these groups has on caregivers of children and youth with CCN is not known. OBJECTIVE This study aimed to: (1) explore the experiences of caregivers of children and youth with CCN who use a Facebook-based P2P support group to communicate; (2) understand their motivations to use the group; and (3) investigate its perceived impact on knowledge of programs and services and sense of community belonging in caregivers. METHODS A qualitative descriptive design was used to explore the experiences and perceived impact of a Facebook-based P2P support group for caregivers of children and youth with CCN in NB. The group was launched in October 2020 and resulted in 108 caregivers joining the group. An online survey was distributed, and semi-structured interviews were conducted with a sub-sample of members. Thematic analysis was used to identify, and report patterns related to caregiver experiences and perceived impacts of participation. RESULTS A sub-sample of members in the Facebook group completed the online survey (n=39) and interviews (n=14). Five themes emerged from interviews: (1) Safe Space; (2) Informational Support and Direction; (3) Virtually Connect with Peers; (4) Impact on Knowledge of Programs and Services; and (5) Degree of Community Belonging. Participants reported joining the group to obtain geographic-specific information support and to connect with peers. Many participants reported an improvement in knowledge of programs and services and felt connected to the community; however, group infancy and diversity among the caregiver population were cited as barriers to community belonging. CONCLUSIONS Online P2P support groups hold significant promise for supporting caregivers in ways that traditional methods have not been able to achieve. Findings from this study suggest that involvement in online, geographic-specific P2P support groups can influence perceived knowledge of services and resources and sense of community belonging among caregivers of children and youth with CCN. This work further provides insight into the experiences and motivations of caregivers of children and youth with CCN who participate in a private social media environment.

scholarly journals Programmes to support transitions in care for children and youth with complex care needs and their families: a scoping review protocol

BMJ Open ◽  
2020 ◽  
Vol 10 (6) ◽  
pp. e033978
Author(s):  
Shelley Doucet ◽  
Janet A Curran ◽  
Sydney Breneol ◽  
Alison Luke ◽  
Emilie Dionne ◽  
...  
Keyword(s):  
Scoping Review ◽  
Transitional Care ◽  
Research Policy ◽  
Children And Youth ◽  
Advisory Council ◽  
Complex Care ◽  
Care Needs ◽  
Transitions In Care ◽  
Scoping Reviews ◽  
Complex Care Needs

IntroductionChildren and youth with complex care needs (CCNs) and their families experience many care transitions over their lifespan and are consequently vulnerable to the discontinuity or gaps in care that can occur during these transitions. Transitional care programmes, broadly defined as one or more intervention(s) or service(s) that aim to improve continuity of care, are increasingly being developed to address transitions in care for children and youth with CCNs. However, this literature has not yet been systematically examined at a comprehensive level. The purpose of this scoping review is to map the range of programmes that support transitions in care for children and youth with CCNs and their families during two phases of their lifespan: (1) up to the age of 19 years (not including their transition to adult healthcare) and (2) when transitioning from paediatric to adult healthcare.Methods and analysisThe Joanna Briggs Institute methodology for scoping reviews (ScR) will be used for the proposed scoping review. ScR are a type of knowledge synthesis that are useful for addressing exploratory research questions that aim to map key concepts and types of evidence on a topic and can be used to organise what is known about the phenomena. A preliminary search of PubMed was conducted in December 2018.Ethics and disseminationEthical approval is not required where this study is a review of the published and publicly reported literature. The research team’s advisory council will develop a research dissemination strategy with goals, target audiences, expertise/leadership, resources and deadlines to maximise project outputs. The end-of-grant activities will be used to raise awareness, promote action and inform future research, policy and practice on this topic.

Stuttering-Related Podcasts: Audio-Based Self-Help for People Who Stutter

2020 ◽  
Vol 5 (5) ◽  
pp. 1131-1138
Author(s):  
Lauren E. Dignazio ◽  
Megan M. Kenny ◽  
Erik X. Raj ◽  
Kyle D. Pelkey
Keyword(s):  
Support Groups ◽  
Support Group ◽  
Online Survey ◽  
Multiple Choice ◽  
Speech Language Pathologists ◽  
Group Leaders ◽  
Self Help ◽  
Group Members

Purpose It is known that people who stutter (PWS) benefit from self-help experiences, such as attending support groups or conferences. However, limited research has been done to explore the listening of stuttering-related podcasts as a form of self-help for PWS. This study seeks to understand the reasons why PWS listen to stuttering-related podcasts and provide descriptions of their listening experiences. Method Thirty-three PWS who have listened to stuttering-related podcasts were recruited to participate in an online survey that included multiple-choice and open-ended questions. Responses were analyzed and grouped into descriptive themes. Results Participants reported listening to stuttering-related podcasts as a way to gain information and perspective. They also reported experiences that fit themes of empowerment and camaraderie, as a result of listening. Conclusions Stuttering-related podcasts seem to be a positive self-help tool for PWS. Stuttering support group leaders and/or speech-language pathologists may consider introducing their group members or clients who stutter to this type of audio-based self-help experience.

Facebook support groups for pediatric rare diseases: opportunities, limitations and privacy concerns (Preprint)

2021 ◽  
Author(s):  
Sarah Catrin Titgemeyer ◽  
Christian Patrick Schaaf
Keyword(s):  
Rare Disease ◽  
Support Groups ◽  
Support Group ◽  
Rare Diseases ◽  
Health Professionals ◽  
Online Survey ◽  
Privacy Rights ◽  
Cross Sectional ◽  
Privacy Concerns ◽  
Group Members

BACKGROUND Due to the nature of rare diseases with affected individuals being widely geographically dispersed, finding an in-person/offline support group itself can be a challenge. Affected individuals therefore turn to social networking platforms such as Facebook for online support groups. OBJECTIVE We aim to put into perspective the opportunities Facebook offers as a tool for pediatric rare disease support groups by investigating its use, advantages and limitations including privacy concerns. We analyze group accessibility and usage, advantages specific to rare diseases, perceived privacy and views on using Facebook for communication between health professionals and parents, pharmaceutical companies and for study recruitment. METHODS We contacted twelve Facebook support groups for twelve respective rare diseases with pediatric onset and invited group members to participate in a cross-sectional online survey. RESULTS Of 231 respondents, 87.0% (n=201) respondents were female, 12.6% (n=29) were male and 1 respondent reported another sex (0.4%, n=1). Respondents’ mean age was 41.56 years (SEM=0.621, SD=9.375). 91.3% (n=211) respondents were parents (183 mothers, 27 fathers, 1 other sex). 59.7% (n=138) reported a self-initiated search for the Facebook group, 24.2% (n=56) received recommendations from their health professionals, 12.6% (n=29) recommendations from someone else affected by the disease. On average, support group members visited Facebook at least once a day, visited and passively participated (read/liked posts) several times a week and participated actively (commented/posted) once a month. 79,6% agreed that they would like to have health professionals as members of the respective Facebook group. Group members expressed more concern about privacy issues on Facebook in general than in their respective Facebook support groups, with concerns mostly related to Facebook itself and non-group-members. CONCLUSIONS Our study confirmed that Facebook enhances support group accessibility for parents of children with rare diseases. Group participants perceive a reduction and elimination of distance, a common challenge in rare disease, and Facebook support groups create an environment of perceived privacy. The group’s privacy setting can be a critical factor for active support group participation. Sharing personal information and pictures on Facebook is very common among group participants, which shows the importance of discussing and protecting children’s privacy rights in this context. CLINICALTRIAL DRKS00016067

Respite care for children and youth with complex care needs and their families

2019 ◽  
Vol 17 (7) ◽  
pp. 1297-1304
Author(s):  
Sydney Breneol ◽  
Sarah T. King ◽  
Shauna Best ◽  
Shelley McKibbon ◽  
Janet A. Curran
Keyword(s):  
Respite Care ◽  
Children And Youth ◽  
Complex Care ◽  
Care Needs ◽  
Complex Care Needs

scholarly journals EDUCATION ON CHILDRENS COMPLEX CARE NEEDS IN GENERAL NURSING CURRICULA IN EUROPE: AN INDUCTIVE CONTENT ANALYSIS

2021 ◽  
pp. 103034
Author(s):  
Anne Clancy ◽  
Elena Montañana Olaso ◽  
Philip Larkin ◽  
Maria Brenner
Keyword(s):  
Content Analysis ◽  
Complex Care ◽  
Care Needs ◽  
Nursing Curricula ◽  
Complex Care Needs

Health Status Transitions in Community-Living Elderly with Complex Care Needs

2011 ◽  
pp. 223-247
Author(s):  
Louise Lafortune ◽  
François Béland ◽  
Howard Bergman ◽  
Joël Ankri
Keyword(s):  
Health Status ◽  
Community Living ◽  
Complex Care ◽  
Care Needs ◽  
Complex Care Needs
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