Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome: A Qualitative Case Study

Güeita‐Rodríguez, Javier; Famoso-Pérez, Pilar; Salom‐Moreno, Jaime; Carrasco‐Garrido, Pilar; Pérez-Corrales, Jorge; Palacios‐Ceña, Domingo

doi:10.3390/ijerph17124466

Cited by 18 publications

(33 citation statements)

References 50 publications

(83 reference statements)

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“…Several categories of health care services were mentioned in the included studies, ranging from specialized health care services (such as specialized hospital settings and treatment teams), local health care services (such as general practitioners, local hospitals), and professional caregivers in the families’ homes (such as health care assistants). Eight studies specifically raised the issue of a lack of knowledge and diagnostic expertise within local levels, even after the child’s diagnosis had been set [ 31 , 33 , 37 , 40 , 49 , 51 , 52 , 55 ].…”

Section: Resultsmentioning

confidence: 99%

“…Several studies included overwhelming parental narratives of fragmented care, with medical teams working in silos instead of integrating the family’s needs, leading to repeated consultations and numerous medical appointments with a range of clinicians in different hospitals [ 27 , 29 – 31 , 37 , 40 , 44 , 50 ]. A lack of coordinated care could contribute to a delayed diagnosis [ 55 ] and feelings of depersonalization, since parents had to tell and re-tell their story to new health care providers [ 31 ].…”

Section: Resultsmentioning

confidence: 99%

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Children with a rare congenital genetic disorder: a systematic review of parent experiences

Lippe

Neteland

Feragen

2022

Orphanet J Rare Dis

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Background Caring for a child with a chronic disease may be demanding and stressful. When a child has a rare condition, the impact of care on parents is amplified due to the rarity of the diagnosis. In order to address the lack of generalized and synthesized knowledge regarding parents’ experiences of having a child with a rare genetic disorder, and give a holistic picture of these experiences, a systematic review of the available qualitative research was conducted. Methods We performed a systematic review, including qualitative studies on parents of children with rare genetic disorders, published between 2000 and 2020. Results The review included 33 qualitative studies. Findings were synthesized and categorized according to three main themes: Parents’ experiences with health care, Responsibilities and challenges, and Factors promoting positive experiences in parents. The findings demonstrate that parents of children with rare genetic disorders share many common challenges, despite evident differences across conditions. Conclusion Coordinated care, and a more holistic approach in the follow up of children with rare genetic disorders is needed. International collaboration on research, diagnostics, producing scientific correct and understandable information available for health care professionals and lay people should be prioritized.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Children with a rare congenital genetic disorder: a systematic review of parent experiences

Lippe

Neteland

Feragen

2022

Orphanet J Rare Dis

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“…The care required by children with PMS requires couples to invest daily time, which can lead to social isolation, emotional problems, and role changes [ 7 , 16 , 27 ]. However, there are no previous qualitative studies describing its impact on the couple.…”

Section: Resultsmentioning

confidence: 99%

Social and Family Challenges of Having a Child Diagnosed with Phelan-McDermid Syndrome: A Qualitative Study of Parents’ Experiences

García‐Bravo

Palacios‐Ceña

García‐Bravo

et al. 2022

IJERPH

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(1) Background: Phelan-McDermid Syndrome (PMS) in children causes significant challenges affecting social and family relationships. The purpose of this study was to explore the experience of parents with children diagnosed with PMS regarding interactions with their social environment; (2) Methods: A qualitative descriptive study was conducted. Participants were recruited using non-probabilistic purposeful sampling. In total, 32 parents of children with PMS were included. In-depth interviews and researchers’ field notes were used to collect the data. An inductive thematic analysis was performed; (3) Results: Five themes were identified: (a) challenges in the relationship as a couple; (b) challenges within the family and close social relationships; (c) challenges in the educational-school environment; (d) challenges in the health environment and with health professionals, and (e) reconnection through the PMS association. It would be beneficial for parents to create training programs on PMS in the educational and healthcare settings, to promote the participation of professionals in the PMS association and to develop care programs focusing in their physical, psychological and social health.

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“…Second, adding spatially explicit indicators into Healthy City indicators should only be viewed as an intermediate step. A facility’s accessibility is affected by its distance to users and the myriad social and economic factors [ 48 , 49 ]. A better indicator of a facility’s impact on urban residents’ health is the population that uses it daily.…”

Section: Discussionmentioning

confidence: 99%

Comparing the Use of Spatially Explicit Indicators and Conventional Indicators in the Evaluation of Healthy Cities: A Case Study in Shenzhen, China

Yang

Luo

Ying

et al. 2020

IJERPH

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Various indicator systems have been developed to monitor and assess healthy cities. However, few of them contain spatially explicit indicators. In this study, we assessed four health determinants in Shenzhen, China, using both indicators commonly included in healthy city indicator systems and spatially explicit indicators. The spatially explicit indicators were developed using detailed building information or social media data. Our results showed that the evaluation results of districts and sub-districts in Shenzhen based on spatially explicit indicators could be positively, negatively, or not associated with the evaluation results based on conventional indicators. The discrepancy may be caused by the different information contained in the two types of indicators. The spatially explicit indicators measure the quantity of the determinants and the spatial accessibility of these determinants, while the conventional indicators only measure the quantity. Our results also showed that social media data have great potential to represent the high-resolution population distribution required to estimate spatially explicit indicators. Based on our findings, we recommend that spatially explicit indicators should be included in healthy city indicator systems to allow for a more comprehensive assessment of healthy cities.

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Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome: A Qualitative Case Study

Cited by 18 publications

References 50 publications

Children with a rare congenital genetic disorder: a systematic review of parent experiences

Children with a rare congenital genetic disorder: a systematic review of parent experiences

Social and Family Challenges of Having a Child Diagnosed with Phelan-McDermid Syndrome: A Qualitative Study of Parents’ Experiences

Comparing the Use of Spatially Explicit Indicators and Conventional Indicators in the Evaluation of Healthy Cities: A Case Study in Shenzhen, China

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