Psychosocial Challenges of Invasive Meningococcal Disease for Children and their Families

Wisemantel, Melinda; Maple, Myfanwy; Massey, Peter; Osbourn, Maggi; Kohlhagen, Julie

doi:10.1080/0312407x.2018.1492624

Cited by 2 publications

(1 citation statement)

References 23 publications

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“…The participants in this study identified the lack of follow-up and information regarding their recovery as an area of unmet need. Interventions aiming to empower people post-hospitalization and manage their recovery may help reduce the distress caused by the fear of the unknown and improve HRQoL [ 37 ]. All AYAs admitted with IMD should be given an individual plan for future care, regardless of their condition at discharge.…”

Section: Discussionmentioning

confidence: 99%

Exploring the Health-Related Quality of Life and the Lived Experience of Adolescents Following Invasive Meningococcal Disease

McMillan,

McDonough,

Angliss

et al. 2024

Healthcare

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Background: Data on the health-related quality of life (HRQoL) for invasive meningococcal disease (IMD) survivors, particularly among adolescents and young adults (AYAs), are limited. This study aimed to investigate the in-depth experiences and impacts of IMD on AYAs. Methods: Participants were recruited from two Australian states, Victoria and South Australia. We conducted qualitative, semi-structured interviews with 30 patients diagnosed with IMD between 2016 and 2021. The interview transcripts were analyzed thematically. Results: Of the participants, 53% were aged 15–19 years old, and 47% were aged 20–24. The majority (70%) were female. Seven themes relating to the participants’ experience of IMD were identified: (1) underestimation of the initial symptoms and then rapid escalation of symptoms; (2) reliance on social support for emergency care access; (3) the symptoms prompting seeking medical care varied, with some key symptoms missed; (4) challenges in early medical diagnosis; (5) traumatic and life-changing experience; (6) a lingering impact on HRQoL; and (7) gaps in the continuity of care post-discharge. Conclusion: The themes raised by AYA IMD survivors identify multiple areas that can be addressed during their acute illness and recovery. Increasing awareness of meningococcal symptoms for AYAs may help reduce the time between the first symptoms and the first antibiotic dose, although this remains a challenging area for improvement. After the acute illness, conducting HRQoL assessments and providing multidisciplinary support will assist those who require more intensive and ongoing assistance during their recovery.

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Section: Discussionmentioning

confidence: 99%

Exploring the Health-Related Quality of Life and the Lived Experience of Adolescents Following Invasive Meningococcal Disease

McMillan,

McDonough,

Angliss

et al. 2024

Healthcare

View full text Add to dashboard Cite

show abstract

Follow-up care experience of patients with invasive meningococcal disease and their family caregivers: a qualitative study

Baloche,

Bedouch,

Carrouel

et al. 2024

BMC Infect Dis

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Background Clinical guidelines recommend systematic follow-up of patients surviving invasive meningococcal disease (IMD) to assess sequelae. However, little is known about survivors and family caregivers’ experiences of the follow-up care. Study sought to explore IMD survivors’ and their family caregivers’ experiences after hospitalization for IMD and to identify unmet needs. Methods Semi-structured interviews were conducted with patients and family caregivers, identified through hospitals database. Interviews were audiotaped, transcribed and subject to a thematic analysis. NVivo software was used for data management and analysis. Results Eight IMD survivors and 14 family caregivers were interviewed. Three themes were identified from the data: (1) perception of patient and family caregiver on follow-up after IMD and role of healthcare professionals; (2) access to care and support; (3) relationship with healthcare professionals. Although most were satisfied with follow-up care after IMD, suggestions for improving the healthcare pathway were made relating information on potential sequelae and follow-up care, coordination, and access to psychological support. Conclusions This study confirms the need for more structured follow-up care for patients suffering from IMD and their families which is currently limited and focused on physical recovery. Optimal follow-up should aim to provide sufficient information, emotional support and logistical support for patient and family caregivers. Trial registration Ethics Committee of University of Lyon, France (ref: 2022-06-23-002). Supplementary Information The online version contains supplementary material available at 10.1186/s12879-024-09860-6.

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Psychosocial Challenges of Invasive Meningococcal Disease for Children and their Families

Cited by 2 publications

References 23 publications

Exploring the Health-Related Quality of Life and the Lived Experience of Adolescents Following Invasive Meningococcal Disease

Exploring the Health-Related Quality of Life and the Lived Experience of Adolescents Following Invasive Meningococcal Disease

Follow-up care experience of patients with invasive meningococcal disease and their family caregivers: a qualitative study

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