Quality of Life and Mental Health in Mothers and Fathers Caring for Children and Adolescents with Rare Diseases Requiring Long-Term Mechanical Ventilation

Boettcher, Johannes; Denecke, Jonas; Barkmann, Claus; Wiegand-Grefe, Silke

doi:10.3390/ijerph17238975

Cited by 32 publications

(45 citation statements)

References 35 publications

(54 reference statements)

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“…This re ects existing grey literature [3,5,30] and is consistent with ndings from condition-speci c studies which used diagnostic tools to measure anxiety and/or depression in rare disease patients and/or carers [20][21][22] and impact on quality of life. [17][18][19] Consistent with condition-speci c research [33][34][35][36], our ndings show that the negative impact on mental health can be chronic, and can occur or recur at different times such as during the 'diagnostic odyssey'; when a diagnosis is given; and while coming to terms with the condition. This highlights the periods when additional emotional support may be particularly important.…”

Section: Discussionsupporting

confidence: 82%

Mental health care for rare disease in the UK – recommendations from a quantitative survey and multi-stakeholder workshop

Spencer-Tansley

Meade

Ali

et al. 2022

Preprint

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Background Rare disease patients and carers report significant impacts on mental health but studies have focussed on relatively few, specific conditions. Collectively rare conditions represent a substantial health burden, with an estimated 3.5 million affected individuals in the UK.Method We explored the impact on mental health of living with a rare condition, and experiences of health service support, through an online survey. We offer recommendations, developed through a multi-stakeholder workshop, for policy and practice toward a more person-centred and integrated approach. Results Eligible responses came from 1,231 patients and 564 carers. Due to their rare condition, the majority of respondents had felt worried/anxious (95%); stressed (93%); low/depressed (90%); emotionally exhausted (88%). Thirty-six percent of patients and 19% of carers had had suicidal thoughts.Challenges that are particular to rare conditions and which negatively affect mental health included limited knowledge of the condition amongst healthcare professionals (88%), not being believed or taken seriously by healthcare professionals (80%), and lack of available information about the condition (76%). Only 23% of respondents felt healthcare professionals considered mental and physical health as equally important. Almost half of patients (46%) and carers (48%) reported never having been asked about their mental health, or that of the person they care for, by healthcare professionals. Our findings indicate that access to, and appropriateness of, professional psychological support needs to be improved. Peer group support is important but signposting is inadequate.Following a multi-stakeholder workshop we developed recommendations for healthcare professionals to be supported to effectively and sensitively recognise and address patients’ and carers’ mental health needs; and for service level coordination of care to integrate professional psychological support with rare disease services.Conclusion Living with a rare disease substantially impacts mental health. Many of the drivers of poor mental health reflect issues specific to managing rare conditions. To meet UK government commitments, there should be a focus on empowering healthcare professionals who treat rare disease patients and on integration of mental health support with rare disease services.

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Section: Discussionsupporting

confidence: 82%

Mental health care for rare disease in the UK – recommendations from a quantitative survey and multi-stakeholder workshop

Spencer-Tansley

Meade

Ali

et al. 2022

Preprint

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“…Correspondingly, previous studies suggest that parents of children with rare congenital surgical diseases score significantly lower on QoL [ 18 – 21 ] and mental health assessments [ 22 , 23 ]. Moreover, studies involving children with rare congenital surgical diseases have shown a significant reduction in parent-reported health-related quality of life (HRQoL) compared to healthy controls [ 24 – 28 ].…”

Section: Introductionmentioning

confidence: 81%

Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic

Fuerboeter

Boettcher

Barkmann

et al. 2021

Orphanet J Rare Dis

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Background COVID-19 has affected our society at large, particularly vulnerable groups, such as children suffering from rare diseases and their parents. However, the psychosocial influences of COVID-19 on these have yet to be investigated. As such, the study’s goal was to evaluate the health-related quality of life (HRQoL), quality of life (QoL), and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic and lockdown measures. Methods A survey of n = 210 parents of children with rare congenital surgical diseases and a control group of n = 88 parents of children without rare diseases was conducted cross-sectionally between April 2020 to April 2021. Data on HRQoL, QoL, and mental health was collected using standardized psychometric questionnaires for children and parents presenting to the pediatric surgery department at a university hospital. Results Mothers of children with rare pediatric surgical diseases showed significantly lower QoL and significantly higher impairment in mental health than a control group and norm data. For fathers, this was solely the case for their QoL. Children’s parent-reported HRQoL and mental health were partially impaired. Social and disease-specific risk factors of the respective outcomes in affected families were identified through regression analysis models. Conclusion Parents of children with rare diseases report severe psychosocial impairment regarding themselves and their children during the COVID-19 pandemic. Therefore, affected families should receive attention and supportive care in the form of a family-center approach to alleviate the additional burden of the COVID-19 pandemic.

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“…Caregivers have an extremely delicate role, which is indeed accompanied by increasing social and public concern. Being a caregiver acquires a relevant importance in the context of several chronic medical conditions because of the different and various needs of patients [ 1 , 2 , 3 , 4 ].…”

Section: Introductionmentioning

confidence: 99%

A Clinical Bridge between Family Caregivers and Older Adults: The Contribution of Patients’ Frailty and Optimism on Caregiver Burden

Sardella

Lenzo

Alibrandi

et al. 2021

IJERPH

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The association between caregiver burden and the physical frailty of older adults has been the object of previous studies. The contribution of patients’ dispositional optimism on caregiver burden is a poorly investigated topic. The present study aimed at investigating whether older adults’ multidimensional frailty and optimism might contribute to the burden of their family caregivers. The Caregiver Burden Inventory was used to measure the care-related burden of caregivers. The multidimensional frailty status of each patient was evaluated by calculating a frailty index, and the revised Life Orientation Test was used to evaluate patients’ dispositional optimism. The study involved eighty family caregivers (mean age 64.28 ± 8.6) and eighty older patients (mean age 80.45 ± 7.13). Our results showed that higher frailty status and lower levels of optimism among patients were significantly associated with higher levels of overall burden and higher burden related to the restriction of personal time among caregivers. Patients’ frailty was additionally associated with caregivers’ greater feelings of failure, physical stress, role conflicts, and embarrassment. Understanding the close connection between patient-related factors and the burden of caregivers appears to be an actual challenge with significant clinical, social, and public health implications.

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Quality of Life and Mental Health in Mothers and Fathers Caring for Children and Adolescents with Rare Diseases Requiring Long-Term Mechanical Ventilation

Cited by 32 publications

References 35 publications

Mental health care for rare disease in the UK – recommendations from a quantitative survey and multi-stakeholder workshop

Mental health care for rare disease in the UK – recommendations from a quantitative survey and multi-stakeholder workshop

Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic

A Clinical Bridge between Family Caregivers and Older Adults: The Contribution of Patients’ Frailty and Optimism on Caregiver Burden

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