Self-reported needs after pediatric stroke

Gordon, Anne; Nguyễn, Loan; Panton, Anna; Mallick, Andrew A; Ganesan, Vijeya; Wraige, Elizabeth; McKevitt, Christopher

doi:10.1016/j.ejpn.2018.06.003

Cited by 9 publications

(5 citation statements)

References 27 publications

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“…Pediatric stroke can be a debilitating disease, leaving survivors and their families coping with persisting issues during their recovery. These problems evolve and become more numerous as the survivor grows up, with as many as 75% of families of a child with stroke having at least 1 unmet need [ 2 ].…”

Section: Introductionmentioning

confidence: 99%

“…Patients have appreciated positivity from clinicians [ 14 ], close and ongoing medical support [ 14 , 15 ], involvement with goal-setting approaches [ 16 , 17 ], and continuity of care. There is limited medical awareness or literature to support parents during their child’s recovery from stroke [ 2 , 9 , 12 ]. Support from charities and both in-person and online community groups partly addresses this issue [ 4 , 13 , 15 ].…”

Section: Introductionmentioning

confidence: 99%

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Factors Influencing Recovery From Pediatric Stroke Based on Discussions From a UK-Based Online Stroke Community: Qualitative Thematic Study

Howdle,

Wright,

Mant

et al. 2024

J Med Internet Res

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Background The incidence of stroke in children is low, and pediatric stroke rehabilitation services are less developed than adult ones. Survivors of pediatric stroke have a long poststroke life expectancy and therefore have the potential to experience impairments from their stroke for many years. However, there are relatively few studies characterizing these impairments and what factors facilitate or counteract recovery. Objective This study aims to characterize the main barriers to and facilitators of recovery from pediatric stroke. A secondary aim was to explore whether these factors last into adulthood, whether they change, or if new factors impacting recovery emerge in adulthood. Methods We performed a qualitative thematic analysis based on posts from a population of participants from a UK-based online stroke community, active between 2004 and 2011. The analysis focused on users who talked about their experiences with pediatric stroke, as identified by a previous study. The posts were read by 3 authors, and factors influencing recovery from pediatric stroke were mapped into 4 areas: medical, physical, emotional, and social. Factors influencing recovery were divided into short-term and long-term factors. Results There were 425 posts relating to 52 survivors of pediatric stroke. Some survivors of stroke posted for themselves, while others were talked about by a third party (mostly parents; 31/35, 89% mothers). In total, 79% (41/52) of survivors of stroke were aged ≤18 years and 21% (11/52) were aged >18 years at the time of posting. Medical factors included comorbidities as a barrier to recovery. Medical interventions, such as speech and language therapy and physiotherapy, were also deemed useful. Exercise, particularly swimming, was deemed a facilitator. Among physical factors, fatigue and chronic pain could persist decades after a stroke, with both reported as a barrier to feeling fully recovered. Tiredness could worsen existing stroke-related impairments. Other long-standing impairments were memory loss, confusion, and dizziness. Among emotional factors, fear and uncertainty were short-term barriers, while positivity was a major facilitator in both short- and long-term recovery. Anxiety, grief, and behavioral problems hindered recovery. The social barriers were loneliness, exclusion, and hidden disabilities not being acknowledged by third parties. A good support network and third-party support facilitated recovery. Educational services were important in reintegrating survivors into society. Participants reported that worrying about losing financial support, such as disability allowances, and difficulties in obtaining travel insurance and driving licenses impacted recovery. Conclusions The lived experience of survivors of pediatric stroke includes long-term hidden disabilities and barriers to rehabilitation. These are present in different settings, such as health care, schools, workplaces, and driving centers. Greater awareness of these issues by relevant professional groups may help ameliorate them.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Factors Influencing Recovery From Pediatric Stroke Based on Discussions From a UK-Based Online Stroke Community: Qualitative Thematic Study

Howdle,

Wright,

Mant

et al. 2024

J Med Internet Res

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“…Despite this sizeable number, diagnosis is often a shock to parents because there is little awareness that strokes can affect children [2]. Recovery from pediatric stroke is a long process with impairments lasting decades after the event [3] and novel deficits may present many years after the stroke itself and existing issues evolve and become more numerous as the survivor grows, with as many as three quarters of families experiencing at least one unmet need post-stroke [4]. Pediatric stroke is under researched [5] and as a result, little is known and available to survivors and their families to support them during recovery [2,4,6,7].…”

Section: Introductionmentioning

confidence: 99%

“…Recovery from pediatric stroke is a long process with impairments lasting decades after the event [3] and novel deficits may present many years after the stroke itself and existing issues evolve and become more numerous as the survivor grows, with as many as three quarters of families experiencing at least one unmet need post-stroke [4]. Pediatric stroke is under researched [5] and as a result, little is known and available to survivors and their families to support them during recovery [2,4,6,7]. Finally, during the recovery process, survivors and their families feel lonely, isolated from other members of their family, previous friends, peers and other survivors [3].…”

Section: Introductionmentioning

confidence: 99%

Exploring the Types of Social Support Exchanged by Survivors of Pediatric Stroke and Their Families in an Online Peer Support Community: Qualitative Thematic Analysis (Preprint)

Wright¹,

Howdle²,

Coulson³

et al. 2023

Preprint

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BACKGROUND Pediatric stroke is relatively rare, under researched and there is little awareness of its occurrence in wider society. There is a paucity of literature on effectiveness of interventions to improve rehabilitation and services available to survivors. Access to online health communities through the internet may be a means of support for pediatric stroke patients and their families during recovery, however little research has been done in this area. OBJECTIVE To identify the types of social support provided by an online peer support group to survivors of pediatric stroke and their families. METHODS Qualitative thematic analysis of posts from a pediatric stroke population on a UK online stroke community active between 2004-2011. The population was split into two groups, based upon whether stroke survivors were 18 and under ( 18y) or over 18 (>18y) at the time of posting. The posts were read by two authors who used the adapted Social Support Behaviour Code to analyze the types of social support exchanged. RESULTS 52 participants who experienced a pediatric stroke were identified, who posted a total of 425 messages to the community. 41 survivors were  18y at the time of posting and written about by others (31/35 mothers), while 11 were >18y and writing about themselves. Survivors and their familes joined together in discussion threads . Support was offered and received by all participants, regardless of age. Of all 425 posts, 193 (45.4%) contained at least one instance of social support. All five types of social support were identified: informational, emotional, network, esteem support and tangible aid. Informational and emotional support were most commonly exchanged. Emotional support was offered more often than informational support among participants  18y at the time of posting, this finding was reversed in the >18y group. Network support and esteem support were less commonly exchanged. Notably, no access support (a sub-category of network support) was exchanged on the community. Tangible aid was the least commonly type of support offered. CONCLUSIONS We found evidence of engagement of childhood stroke survivors and their families in an online stroke community, with peer support being exchanged between both long and short-term survivors of pediatric stroke. Engagement of long-term survivors of pediatric stroke through the online community was key as they were able to offer informational support from lived experience. Further interventional research is needed to assess health and rehabilitation outcomes from engagement with online support groups. Research is also needed to ensure safe, nurturing online communities. CLINICALTRIAL n/a

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“…The primary difference between these two patient populations is that in adults, a stroke can result in a loss of functional independence, whereas in children, it can also interfere with their growth and development due to prolonged neurological dysfunction (4)(5)(6)(7). Children, young adults, and their parents exhibit high levels of unmet needs across a range of health domains in the months and years after pediatric stroke (8). Due to delays in presentation, only about 2% of children are eligible for treatment with thrombolysis and thrombectomy (9).…”

Section: Introductionmentioning

confidence: 99%

The influential factors and non-pharmacological interventions of cognitive impairment in children with ischemic stroke

Hao

Zhao

et al. 2022

Front. Neurol.

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BackgroundThe prevalence of pediatric ischemic stroke rose by 35% between 1990 and 2013. Affected patients can experience the gradual onset of cognitive impairment in the form of impaired language, memory, intelligence, attention, and processing speed, which affect 20–50% of these patients. Only few evidence-based treatments are available due to significant heterogeneity in age, pathological characteristics, and the combined epilepsy status of the affected children.MethodsWe searched the literature published by Web of Science, Scopus, and PubMed, which researched non-pharmacological rehabilitation interventions for cognitive impairment following pediatric ischemic stroke. The search period is from the establishment of the database to January 2022.ResultsThe incidence of such impairment is influenced by patient age, pathological characteristics, combined epilepsy status, and environmental factors. Non-pharmacological treatments for cognitive impairment that have been explored to date mainly include exercise training, psychological intervention, neuromodulation strategies, computer-assisted cognitive training, brain-computer interfaces (BCI), virtual reality, music therapy, and acupuncture. In childhood stroke, the only interventions that can be retrieved are psychological intervention and neuromodulation strategies.ConclusionHowever, evidence regarding the efficacy of these interventions is relatively weak. In future studies, the active application of a variety of interventions to improve pediatric cognitive function will be necessary, and neuroimaging and electrophysiological measurement techniques will be of great value in this context. Larger multi-center prospective longitudinal studies are also required to offer more accurate evidence-based guidance for the treatment of patients with pediatric stroke.

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Self-reported needs after pediatric stroke

Abstract: Children and young people and their parents have high levels of unmet need across a range of health domains in the months and years after pediatric stroke. This information supports the importance of a needs-based approach to maximising health and well-being.

Cited by 9 publications

References 27 publications

Factors Influencing Recovery From Pediatric Stroke Based on Discussions From a UK-Based Online Stroke Community: Qualitative Thematic Study

Factors Influencing Recovery From Pediatric Stroke Based on Discussions From a UK-Based Online Stroke Community: Qualitative Thematic Study

Exploring the Types of Social Support Exchanged by Survivors of Pediatric Stroke and Their Families in an Online Peer Support Community: Qualitative Thematic Analysis (Preprint)

The influential factors and non-pharmacological interventions of cognitive impairment in children with ischemic stroke

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