Dataset Information

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

ABSTRACT: 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.

SUBMITTER: Cardinali P

PROVIDER: S-EPMC6690318 | biostudies-other | 2019

REPOSITORIES: biostudies-other

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

Cardinali Paola P Migliorini Laura L Rania Nadia N

Frontiers in psychology 20190805

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 anal ...[more]

PMID: 31428029

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Project description:BackgroundThe global issue of low breastfeeding rates has been widely reported. Quantitative studies have shown the positive effects of peer support on breastfeeding. However, the experiences of mothers who receive breastfeeding peer support have been found to vary. To date, no systematic qualitative summary has been conducted to document the impact of peer support, nor to provide advice for its implementation from the perspective of breastfeeding mothers. This review aims to systematically synthesize qualitative findings on mothers' experiences of breastfeeding peer support to provide evidence for optimizing peer support services and ultimately enhancing their role in promoting breastfeeding.MethodsPubMed, Embase, Cochrane Library, Ovid, Web of Science, CINAHL, China National Knowledge Infrastructure (CNKI), WanFang Datebase, VIP Database and Chinese Biomedical Database (CBM) were searched from the inception of each database until January 2023, to collect qualitative studies and mixed methods studies that included qualitative findings on mothers' experiences with breastfeeding peer support. The Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) was used to extract data and evaluate the quality of the included articles. The meta-integration method was used to explain and integrate the research findings. The review process was carried out by two authors independently, and the disagreements were resolved through consensus.ResultsA total of 15 articles were included in the study, consisting of 13 qualitative studies and 2 mixed methods studies. The analysis identified four integrated themes: (1) obtaining psycho-emotional support; (2) acquiring knowledge and skills; (3) expectations for breastfeeding peer support; and (4) feeding perceptions and behavior change. It should be noted that the articles reviewed are in English and mostly originate from developed countries or regions. Therefore, the generalizability of the integrated findings to underdeveloped regions or non-English speaking countries may be limited.ConclusionMothers perceived that peer support had a positive impact on breastfeeding. To improve the effectiveness of peer support in promoting breastfeeding, it is important to consider the individual needs of each mother. It is recommended that peer support services should be standardized in the future, including the accreditation, training, supervision, and management of peer supporters.

Project description:Objective: To describe perceptions of maternal discrimination and to begin to understand patterns around timing of starting families, infertility, and post-partum depression among veterinary mothers. Design: Cross-sectional questionnaire with closed and open-ended questions posted to a social media platform "Moms with a DVM." Sample: 1,082 veterinary mothers in the United States. Procedures: An online questionnaire was administered regarding perceived discrimination, inequities in the work-place due to pregnant or maternal status, desired accommodations, timing of pregnancy(ies), fertility issues, and postpartum experiences. Results: At least one form of perceived discrimination was reported by 819 (75.7%) respondents (M = 2.6, SD = 2.1, range 0-10). Specifically, 789 (72.9%) reported maternal discrimination. Over half of the sample (n = 632, 58.4%) reported at least one instance of perceived inequity in the workplace due to status as a mother (M = 1.23, SD = 1.4, range 0-5). A majority (906, 83.7%) reported that their career had "definitely" or "maybe" affected the timing of their children. One hundred eighty-nine respondents (17.5%) experienced at least one miscarriage, and 192 (17.6%) used fertility treatment due to difficulty conceiving. Postpartum depression was diagnosed in 181 respondents (16.7%), and 353 (32.6%) reported symptoms consistent with postpartum depression but did not seek medical care. Of 953 participants who needed accommodations for breastfeeding and/or pumping while at work, 130 (13.6%) reported excellent accommodations, 454 (47.6%) adequate, 258 (27.1%) inadequate, and 111 (11.6%) had no accommodations provided. Conclusions and Clinical Relevance: Participants reported experiences of perceived maternal discrimination, as well as inequities and lack of support services due to status as a mother. These results highlight the need for attention and changes to ensure veterinarians have supportive and sustainable career options.

Project description:Home to a culturally heterogeneous population, India is also a melting pot of genetic diversity. The population architecture characterized by multiple endogamous groups with specific marriage patterns, including the widely prevalent practice of consanguinity, not only makes the Indian population distinct from rest of the world but also provides a unique advantage and niche to understand genetic diseases. Centuries of genetic isolation of population groups have amplified the founder effects, contributing to high prevalence of recessive alleles, which translates into genetic diseases, including rare genetic diseases in India.Rare genetic diseases are becoming a public health concern in India because a large population size of close to a billion people would essentially translate to a huge disease burden for even the rarest of the rare diseases. Genomics-based approaches have been demonstrated to accelerate the diagnosis of rare genetic diseases and reduce the socio-economic burden. The Genomics for Understanding Rare Diseases: India Alliance Network (GUaRDIAN) stands for providing genomic solutions for rare diseases in India. The consortium aims to establish a unique collaborative framework in health care planning, implementation, and delivery in the specific area of rare genetic diseases. It is a nation-wide collaborative research initiative catering to rare diseases across multiple cohorts, with over 240 clinician/scientist collaborators across 70 major medical/research centers. Within the GUaRDIAN framework, clinicians refer rare disease patients, generate whole genome or exome datasets followed by computational analysis of the data for identifying the causal pathogenic variations. The outcomes of GUaRDIAN are being translated as community services through a suitable platform providing low-cost diagnostic assays in India. In addition to GUaRDIAN, several genomic investigations for diseased and healthy population are being undertaken in the country to solve the rare disease dilemma.In summary, rare diseases contribute to a significant disease burden in India. Genomics-based solutions can enable accelerated diagnosis and management of rare diseases. We discuss how a collaborative research initiative such as GUaRDIAN can provide a nation-wide framework to cater to the rare disease community of India.

Dataset Information

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

Publications

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

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