The Quality of Life of Caregivers who Care for a Child with a Rare Disease – Perception of Changes as a Result of Care in the Czech Republic

Michalík, Ján

doi:10.1016/j.sbspro.2014.01.1279

Cited by 9 publications

(11 citation statements)

References 6 publications

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“…As with other studies of caregivers (Anderson et al, 2013; Michalík, 2014), our participants define HAE by their negative experiences (Garrino et al, 2015). Studies of patients and families indicate anxiety (Dos Santos et al, 2015; Sánchez et al, 2015), fear, and grief (Aabom et al, 2015; Caballero et al, 2013).…”

Section: Discussionmentioning

confidence: 99%

“…We concur with Bygum et al (2015) in that the vulnerability of the patient generates fear, insecurity, and concern in the family. The absence of a diagnosis masks the risks and the development of HAE (Dos Santos et al, 2015; Michalík, 2014), making the adaptation process more difficult for the family.…”

Section: Discussionmentioning

confidence: 99%

“…A wide view of strengths and weaknesses is key in adapting family management styles (Knafl et al, 2008) and the first step is doing everyday activities in a natural way (Bygum et al, 2015). The management of behaviors involves a consensus on the goals, priorities, and management of HAE at the family level (Michalík, 2014). The difficult road to diagnosis requires incorporating HAE into everyday life routines (Betschel et al, 2014; Deek et al, 2016), coming to terms with the trivialization of health care services and accompanying the patient (Arkuszewski et al, 2015).…”

Section: Discussionmentioning

confidence: 99%

“…We agree with Cipolletta, Marchesin, and Benini (2015) in the need for care, health care and social support for these families. Caring for a patient with HAE implies a sudden change for family caregivers and constitutes a difficult life experience (Michalík, 2014). From the very first symptoms, the delays in diagnosis and the lack of support (Anderson et al, 2013) fall within the remit of a family health nurse’s area of care.…”

Section: Discussionmentioning

confidence: 99%

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The Diagnosis of Hereditary Angioedema: Family Caregivers’ Experiences

et al. 2018

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The aim of this study was to understand the experiences of family caregivers in the process of diagnosing hereditary angioedema. An interpretive and qualitative research methodology based on Gadamer's philosophical hermeneutics was carried out. Data collection took place between May 2015 and August 2016 and included a focus group and in-depth interviews with 16 family caregivers. Two themes define the experiences of family caregivers: "Family life focuses on identifying the problem" and "Discovering and coping with a complex diagnosis." The process of diagnosis generates fear, anxiety, uncertainty, and incomprehension. Family caregivers are the main support for patients diagnosed with hereditary angioedema. As they share in the patients' suffering, they need a diagnosis to be established to be able to cope with the disease and offer support. Family health nurses can contribute to improving the coping process in this phase of the disease.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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The Diagnosis of Hereditary Angioedema: Family Caregivers’ Experiences

et al. 2018

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“…Despite this interest in patients with rare diseases, there has been little investigation into the overall experiences of parents and caregivers of children with complex rare disorders (Currie and Szabo, 2018). Nonetheless, these diseases have a considerable impact on the quality of life of not only patients but also their main caregivers, who can perceive a very deleterious impact on their social, professional and family life (Michalík, 2014; Tejada-Ortigosa et al, 2019). As is the case with most childhood chronic conditions, rare diseases impact the whole family, especially with respect to normal family routines that serve an important scaffolding function for the well-being of children (Emiliani et al, 2010; Hammons and Fiese, 2010; Migliorini et al, 2011, 2016; Potì et al, 2018) as well as with respect to increases in the family’s financial burden (Dogba et al, 2013).…”

Section: Introductionmentioning

confidence: 99%

The Caregiving Experiences of Fathers and Mothers of Children With Rare Diseases in Italy: Challenges and Social Support Perceptions

2019

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Family caregiving is a growing phenomenon with the increased prevalence of chronic illness and shorter hospitalizations. Rare diseases pose significant challenges not only to patients living with these kinds of pathologies but also to those who care for these patients. The caregiving role has specific characteristics. The present work aims to increase knowledge of the challenges that are common or specific to fathers and mothers of children diagnosed with a rare disease. Moreover, the paper analyses the kinds of social support they experience according to gender. A descriptive study was conducted using grounded theory methodology. A semi-structured interview with open-ended questions was conducted with 15 parents of children with a rare disease. The interview was organized into three main areas: personal experiences in caring for a child with a rare disease, family changes and perceived social support. The transcriptions were analyzed using NVivo 11 software. From data analysis, themes emerged regarding the challenges shared by fathers and mothers, but some aspects also emerged that were gender-specific. The analyses of differences between mothers’ and fathers’ narratives showed that there is a specific experience of the impact that caregiving has on parents’ relationships with their jobs and on their worries. Self-help group is the main source of social support for all respondents. We discuss these findings in relation to possible appropriate specific interventions and support for family caregiving.

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A systematic review and integrative sequential explanatory narrative synthesis: The psychosocial impact of parenting a child with a lysosomal storage disorder

Hassall

Smith

Rust

et al. 2022

J of Inher Metab Disea

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Lysosomal storage disorders are rare multiorgan, degenerative conditions requiring invasive treatment. Rare disorders pose unique challenges; therefore, exploring their impact is crucial for understanding family needs. This novel review aimed to understand the psychosocial outcomes for parents of children with lysosomal storage disorders. Five electronic databases were systematically searched. Thirty‐eight (23 qualitative, 10 qualitative and 5 mixed methods) studies were included, analysed using a sequential explanatory narrative synthesis and appraised for their methodological quality. Quantitative data revealed the multifaceted impact on parents' psychological and social wellbeing. Qualitative data informed the challenges that these parents faced which were expressed within three main themes: (a) Uncertainty and the unknown, (b) All‐encompassing impact and (c) Finding a way forward. The synthesis demonstrated that factors associated with the condition (symptoms, behaviour and severity) had a substantial negative impact on parental outcomes, upheld by concurrent loss (deterioration and poor prognosis) and uncertainty. This substantive integrated review revealed considerable unmet parental psychosocial needs.

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The Quality of Life of Caregivers who Care for a Child with a Rare Disease – Perception of Changes as a Result of Care in the Czech Republic

Cited by 9 publications

References 6 publications

The Diagnosis of Hereditary Angioedema: Family Caregivers’ Experiences

The Diagnosis of Hereditary Angioedema: Family Caregivers’ Experiences

The Caregiving Experiences of Fathers and Mothers of Children With Rare Diseases in Italy: Challenges and Social Support Perceptions

A systematic review and integrative sequential explanatory narrative synthesis: The psychosocial impact of parenting a child with a lysosomal storage disorder

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