“I Just Learned by Observation and Trial and Error”: Exploration of Young Caregiver Training and Knowledge in Families Living with Rare Neurological Disorders

Kavanaugh, Melinda S.; Cho, Chi C.; Howard, Megan

doi:10.1007/s10566-019-09490-z

Cited by 17 publications

(7 citation statements)

References 26 publications

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“…Formal training for carers is lacking. Parents of those with a rare disease have expressed that they would value receiving training to assist them in their caring needs 40 as would young carers 41 . Training for carers would enable improved, safer care and may facilitate better relationships with HCPs.…”

Section: Discussionmentioning

confidence: 99%

Carer reported experiences: supporting someone with a rare disease

McMullan¹,

Crowe²,

Downes³

et al. 2020

Preprint

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Background The uniqueness and complexity of rare diseases, together with a perceived lack of understanding from health professionals, can make caring for someone with a rare disease extremely challenging. Carers are often forced to become expert patients alongside people they care for. Due to the demands placed upon carers it is essential that appropriate support is available for them to ensure they can continue to carry out this vital role. This exploratory study researched challenges carers face when looking after someone with a rare disease and identify how they could be better supported in this role. Methods To be eligible to participate, respondents had to be adults caring for someone with a rare disease. Mixed methods were used including an online survey (n=57 respondents) where carers highlighted a need for better support specific to their mental health needs, liaising with health and social care professionals, financial, communication, training and respite options. During a facilitated workshop (n=32 attendees) discussions focused on challenges carers face as well as priorities to better support carer needs in the future. Results While carers reported several positive aspects of their caring role, the majority of comments highlighted challenges such as sub-optimal interactions with healthcare professionals, insufficient (or absent) emotional, psychological and social support, lack of financial support, and lack of awareness of existing support services. Conclusion It is important that strategies are put in place to ensure that carers take the time they need to care for themselves and raise awareness of available support options for carers of people with a rare disease(s) from health and social care providers, charities, or support groups.

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Section: Discussionmentioning

confidence: 99%

Carer reported experiences: supporting someone with a rare disease

McMullan¹,

Crowe²,

Downes³

et al. 2020

Preprint

View full text Add to dashboard Cite

show abstract

“…Formal training for carers is lacking ‐ our survey confirmed that less than a fifth of the respondents had received formal training as carers. Parents of those with a rare disease have expressed that they would value receiving training to assist them in their caring needs (Somanadhan & Larkin, 2016) as would young carers (Kavanaugh et al., 2019). Training for carers would enable improved, safer care and may facilitate better relationships with HCPs.…”

Section: Discussionmentioning

confidence: 99%

Carer reported experiences: Supporting someone with a rare disease

McMullan¹,

Crowe²,

Downes³

et al. 2021

Health Social Care Comm

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This exploratory study aimed to gain an understanding of carer reported experiences derived specifically from persons caring for someone with a rare disease. The survey took place online on the SmartSurvey platform from November 2019 to January 2020.The facilitated workshop took place in Bangor Carnegie Library, Northern Ireland. To be eligible to participate in the online survey respondents had to be adults caring for someone with a rare disease. Fifty-seven respondents took part, 15.8% male, 84.2% female.Thirty-two attendees were part of the facilitated workshop. While carers reported several positive aspects of their caring role, the majority of comments highlighted challenges such as sub-optimal interactions with healthcare professionals, insufficient (or absent) emotional, psychological and social support, lack of financial support and lack of awareness of existing support services. It is important that strategies are put in place to ensure that carers are given the time they need to care for themselves, and that awareness is raised of what support options are available for carers of people with a rare disease(s) from health and social care providers, charities or support groups.

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“…Interactions among and integration of these resources can support caregivers in meeting the care needs of the older adult (Araújo et al, 2018;Mazanec et al, 2018;Mollica et al, 2017). Conversely, gaps and misalignment of resources can negatively affect both caregiver and patient outcomes (Kavanaugh et al, 2019;Mollica et al, 2020). Examining how caregivers leverage available resources to meet the care needs of an older adult during the postacute HHC period highlights potential strategies for engaging caregivers.…”

Section: Discussionmentioning

confidence: 99%

“Doing the Right Thing”: Family Caregivers Managing Medical and Nursing Tasks in the Postacute Home Health Care Setting

et al. 2020

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Family caregivers often manage complex medical and nursing tasks (MNTs) for older adults transitioning from hospital to home. To explore caregivers’ experiences managing MNTs in the postacute home health care (HHC) setting, we interviewed by phone 20 caregivers of older adults who received HHC following a hospitalization. Interviews were recorded, transcribed, and analyzed using directed content analysis. Caregivers highlighted the technical complexity and emotional impact of performing MNTs, as well as social (e.g., family, friends) and environmental (e.g., neighborhood, housing) resources they leveraged to meet the older adults’ care needs. Caregivers also identified challenges coordinating care and services within HHC and the larger health care system. Caregiver engagement in the postacute HHC setting should incorporate tailored training and support, assessments of socioenvironmental context and resources, and facilitated navigation of the health care system. Future research should elucidate factors associated with successful collaborative relationships among HHC providers, older adults, and their caregivers in the postacute HHC setting.

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“I Just Learned by Observation and Trial and Error”: Exploration of Young Caregiver Training and Knowledge in Families Living with Rare Neurological Disorders

Cited by 17 publications

References 26 publications

Carer reported experiences: supporting someone with a rare disease

Carer reported experiences: supporting someone with a rare disease

Carer reported experiences: Supporting someone with a rare disease

“Doing the Right Thing”: Family Caregivers Managing Medical and Nursing Tasks in the Postacute Home Health Care Setting

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