Abstract:Tracheotomy in the pediatric population creates unique challenges for parents. Parents often feel underprepared to provide adequate tracheostomy care. Social media is used as a resource for many medical conditions. We looked at Facebook use among parents of children with a tracheostomy to determine how this resource is used as support and to assess common concerns that require improved education prior to discharge. We joined 8 Facebook groups focused on children with a tracheostomy, analyzed the posts for how … Show more
“…HCPs may be reluctant to engage with parents through internet/social media for fear of violating professional boundaries (De Clercq et al, 2020). Parents of children with tracheostomy use social media for gaining knowledge and for getting medical advice (Huestis et al, 2020). Therefore, HCPs guiding parents during TDM should explore parents' use of the internet as a resource.…”
Objectives
Caregivers of children with medical complexity (CMC) face decisions about life-sustaining interventions, such as tracheostomy. Our objective is to describe the support needs of caregivers of CMC and the resources they use surrounding tracheostomy decision-making (TDM) for their children.
Methods
This qualitative study, conducted between 2013 and 2015, consisted of semi-structured interviews with 56 caregivers of 41 CMC who had tracheostomies, and 5 focus groups of 33 clinicians at a tertiary care children's hospital. Participants were asked about their perspectives on the TDM process. Qualitative data were transcribed, coded, and organized into themes.
Results
Caregivers used five domains of resources surrounding TDM: (1) social network including extended family members, friends, and clergy; (2) healthcare providers including physicians and nurses; (3) other parents of children with tracheostomy; (4) tangible materials such as print materials, videos, tracheostomy tubes, mannequins, and simulation labs; and (5) internet including websites, social media, and online health communities. Caregivers used these resources for (1) decision-making, (2) becoming knowledgeable and skillful about child's diagnosis, tracheostomy, and home care, and (3) emotional and spiritual well-being. Caregivers agreed that they received enough support, but there were gaps. Clinicians were knowledgeable about these resources, discussed social network and internet less often than the other domains, and identified gaps in supporting caregivers.
Significance of results
Caregivers’ need for support and use of resources surrounding tracheostomy placement for CMC extended beyond decision-making, and included becoming knowledgeable and getting emotional/spiritual support. Healthcare providers exploring these resources with caregivers could improve the quality of TDM communication.
“…HCPs may be reluctant to engage with parents through internet/social media for fear of violating professional boundaries (De Clercq et al, 2020). Parents of children with tracheostomy use social media for gaining knowledge and for getting medical advice (Huestis et al, 2020). Therefore, HCPs guiding parents during TDM should explore parents' use of the internet as a resource.…”
Objectives
Caregivers of children with medical complexity (CMC) face decisions about life-sustaining interventions, such as tracheostomy. Our objective is to describe the support needs of caregivers of CMC and the resources they use surrounding tracheostomy decision-making (TDM) for their children.
Methods
This qualitative study, conducted between 2013 and 2015, consisted of semi-structured interviews with 56 caregivers of 41 CMC who had tracheostomies, and 5 focus groups of 33 clinicians at a tertiary care children's hospital. Participants were asked about their perspectives on the TDM process. Qualitative data were transcribed, coded, and organized into themes.
Results
Caregivers used five domains of resources surrounding TDM: (1) social network including extended family members, friends, and clergy; (2) healthcare providers including physicians and nurses; (3) other parents of children with tracheostomy; (4) tangible materials such as print materials, videos, tracheostomy tubes, mannequins, and simulation labs; and (5) internet including websites, social media, and online health communities. Caregivers used these resources for (1) decision-making, (2) becoming knowledgeable and skillful about child's diagnosis, tracheostomy, and home care, and (3) emotional and spiritual well-being. Caregivers agreed that they received enough support, but there were gaps. Clinicians were knowledgeable about these resources, discussed social network and internet less often than the other domains, and identified gaps in supporting caregivers.
Significance of results
Caregivers’ need for support and use of resources surrounding tracheostomy placement for CMC extended beyond decision-making, and included becoming knowledgeable and getting emotional/spiritual support. Healthcare providers exploring these resources with caregivers could improve the quality of TDM communication.
“…These measures collectively serve as bulwarks against the upheaval associated with the pandemic. Purposeful efforts are necessary to foster a global learning community [31] , promote collaborative best practices [62] , and align patient-centered care with safety across stakeholders [63] . Fig.…”
“…Venn diagrams representing codes associated with (A) The "Acceptance pathway" and (B) The "Resignation pathway" of adjustment to caring for a child with tracheostomy consistent with the findings of other similar work on this topic. 5,10,[14][15][16][17][18][19][20] In addition, There appears to be evidence of specific motivations associated with these themes. Further analysis revealed two divergent pathways with substantial implications for the experience of children with tracheostomy, their caregivers, and families.…”
Section: Discussionmentioning
confidence: 99%
“…9 Caregivers, particularly those who are motivated enough to be blog authors and or forum organizers, will encourage other families to seek out these resources, which is confirmed by a recent analysis of Facebook use by parents of children with tracheostomy. 10 Thus, clinicians should acknowledge that information will be shared within these communities. However, despite this recent paper, little is known regarding the content, quality, and rigor of information available in these groups.…”
Objective: Decision-making around tracheostomy placement and chronic respiratory support in children is complicated. Families often seek support and advice from outside the medical care team, including from social media. We undertook this study to characterize the content and nature of online resources created and managed primarily by caregivers of children living with tracheostomy and chronic mechanical ventilation.Design/Setting: We used a "grey literature" search methodology to identify internet resources created by caregivers of children with tracheostomy. We included only publicly available, nonindustry associated, English language, North American websites updated at least once in 2019. We then applied inductive content analysis to establish central themes, patterns and associations.Measurements/Main Results: We identified six blogs/forums that met our search criteria. We identified four main themes: (1) Uncertainty, (2) Lived experiencewants, needs, and emotions, (3) Seeking context and meaning, and (4) Advice/information sharing/support. Two patterns of coping were identified on the basis of the relationships between codes. The "Acceptance pathway" is associated with a sense of self-actualization, mastery, satisfaction, return to normalcy, and ultimately acceptance. The "Resignation pathway" is associated with a sense of lack of control, frustration, burnout and stress, persistent lack of normalcy, and resignation to the tracheostomy as a negative but necessary outcome.
Conclusion:Caregivers often come to see themselves as experts in the care of children with tracheostomy, though many still express ambivalence about their knowledge and skills.
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