A parent first: Exploring the support needs of parents caring for a child with medical complexity in Australia

Moyes, Anita; Abbott, Theresa; Baker, Sue; Reid, Carlton; Thorne, Rayleen; Mörelius, Evalotte

doi:10.1016/j.pedn.2022.09.018

Cited by 2 publications

(6 citation statements)

References 36 publications

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“…More than ever during COVID times, additional support is required to access healthcare online or at the hospital to ease the burden for these parents. 13,14 Parents also need to protect themselves to prevent passing COVID to their children and to be able to care for their children, especially when support may be limited. Similarly, the implications of long COVID need to be considered.…”

Section: Discussionmentioning

confidence: 99%

“…This is in agreement with previous research from WA, where families of children with medical complexity describe their support needs similarly despite the complexities. 13,14 Participants were recruited from one family support organisation and English speaking, which may limit the applicability of the findings. No single parents were involved in the study; this group is expected to experience higher stress levels.…”

Section: Discussionmentioning

confidence: 99%

“…Procedures and staff were unprepared at the start of the pandemic, and these recommendations have since been implemented at the children's hospital. More than ever during COVID times, additional support is required to access healthcare online or at the hospital to ease the burden for these parents 13,14 . Parents also need to protect themselves to prevent passing COVID to their children and to be able to care for their children, especially when support may be limited.…”

Section: Discussionmentioning

confidence: 99%

“…Previous research has confirmed that since the COVID‐19 crisis, parents have experienced stress regarding social distancing, remote learning, financial difficulties and space for themselves 12 . Yet, there is a lack of literature on parents' experiences caring for children with long‐term conditions, which is already known to cause stress 13,14 …”

Section: Introductionmentioning

confidence: 99%

“…12 Yet, there is a lack of literature on parents' experiences caring for children with long-term conditions, which is already known to cause stress. 13,14 Long-term or chronic conditions among children are rising 15 and refer to a wide range of conditions, illnesses and diseases that tend to be long-lasting with persistent effects. 16 Children with long-term conditions are a vulnerable population dependent on health and education services that have been impacted by the pandemic.…”

mentioning

confidence: 99%

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COVID‐19 in Western Australia: ‘The last straw’ and hopes for a ‘new normal’ for parents of children with long‐term conditions

Smith

Tallon

Smith

et al. 2023

Health Expectations

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BackgroundChildren with long‐term conditions are vulnerable due to the treatments required for their conditions. Since the start of the coronavirus disease 2019 (COVID‐19) pandemic, Western Australians experienced restrictions that changed daily life activities but were able to return to some of their previous routines due to the restrictions.AimThe study explored the stress experiences of parents caring for children with long‐term conditions during COVID‐19 in Western Australia.Design and ParticipantsThe study was codesigned with a parent representative caring for children with long‐term conditions to ensure essential questions were targeted. Twelve parents of children with various long‐term conditions were recruited. Ten parents completed the qualitative proforma, and two parents were interviewed in November 2020. Interviews were audio‐recorded and transcribed verbatim. Data were anonymised and analysed using reflexive thematic analysis.FindingsTwo themes were produced: (1) ‘Keep my child safe’ describes the children's vulnerabilities due to their long‐term conditions, the adjustments parents' made to keep their children safe and the various consequences faced. (2) ‘COVID‐19's silver lining’ covers the positives of the COVID‐19 pandemic, including their children having fewer infections, the availability of telehealth appointments, relationship improvements and the parent's hopes for a new normal where behaviours prevent transmission of infectious (e.g., hand sanitising).ConclusionWestern Australia provided a unique context for the COVID‐19 pandemic due to no transmission of the virus severe acute respiratory syndrome coronavirus 2 at the time of the study. The tend and befriend theory aids in explaining the parents' stress experiences, and the application highlights a unique aspect of this theory. Parents tended to their children during COVID‐19, but many could no longer rely on others for connection, support and respite, and became further isolated in attempting to protect their children due to COVID‐19 consequences. The findings highlight that some parents of children with long‐term conditions need specific attention during times of pandemics. Further review is recommended to support parents through the impact of COVID‐19 and similar crises.Patient or Public ContributionThis study was codesigned with an experienced parent representative who was part of the research team and involved throughout the research process to ensure meaningful end‐user engagement and ensure essential questions and priorities were addressed.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

mentioning

confidence: 99%

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