Information seeking by parents of children with physical disabilities: An exploratory qualitative study

Alsem, Mattijs; Ausems, F.; Verhoef, M.; Jongmans, Marian J.; Meily-Visser, J. M. A.; Ketelaar, Marjolijn

doi:10.1016/j.ridd.2016.11.015

Cited by 59 publications

(70 citation statements)

References 40 publications

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“…The families in this study, however, varied from those reported by Black, in that these families knew what caused the microcephaly (Zika), even if they did not understand the pathophysiology of the sequelae to the infection, while those in the Black () study searched for explanations for ‘how and why this happened’ (p. 17) because the cause of the congenital defects was unknown. Parents of children with a congenital defect seek two types of information: official information from health professionals, and life experiences shared by friends and colleagues in virtual communities and family support groups (Alsem et al., ). In our study, families also sought information online, but their primary purpose was to further understand Zika infection, which was largely unknown by the time they were receiving the diagnosis of Zika‐related microcephaly.…”

Section: Discussionmentioning

confidence: 99%

Bad news: Families’ experiences and feelings surrounding the diagnosis of Zika‐related microcephaly

et al. 2018

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The rapidly increasing number of cases of Zika virus and limited understanding of its congenital sequelae (e.g., microcephaly) led to stories of fear and uncertainty across social media and other mass communication networks. In this study, we used techniques generic to netnography, a form of ethnography, using Internet‐based computer‐mediated communications as a source of data to understand the experience and perceptions of families with infants diagnosed with Zika‐related microcephaly. We screened 27 YouTube™ videos published online between October 2015 and July 2016, during which the Zika epidemic started, peaked, and declined. We identified three themes: (a) experiencing the news of a diagnosis of Zika‐associated microcephaly; (b) experiencing feelings and expectations of the ‘imperfect’ child; and (c) seeking to understand microcephaly to care for the child. We found that families experienced distressing feelings of shock, sadness, hopelessness, and pain, while dealing with emerging and sometimes conflicting information being transmitted by news outlets, uncertainty about the child's health, and healthcare providers’ lack of clarity to guide the family members. The ‘unknown’ factor of ZIKA was an additional stressful factor in the experience of the families.

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Section: Discussionmentioning

confidence: 99%

Bad news: Families’ experiences and feelings surrounding the diagnosis of Zika‐related microcephaly

et al. 2018

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“…Furthermore, literature has also shown that therapists may not be aware of available community resources. Although recent studies have begun to identify the information needs of young people (Nieuwenhuijsen et al, ), much of the literature still targets parents (Alsem et al, ) or the family unit as a whole (Palisano et al, ). The evidence base is therefore weighted towards the information needs of parents, and we are only starting to learn about the needs of emerging adults.…”

Section: Introductionmentioning

confidence: 99%

“If I had been given that information back then”: An interpretive description exploring the information needs of adults with cerebral palsy looking back on their transition to adulthood

Freeman

Stewart

Cunningham

et al. 2018

Child

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“…In the study of Bertule conducted with the families of the children with cerebral palsy, the largest number of needs was marked in the subscale ‘Needs for Information’. In other studies, the parents with handicapped children stated that they primarily needed information . In the literature, it has been stated that the parents of children with special needs do not have enough information about the services especially for their children and their families .…”

Section: Discussionmentioning

confidence: 99%

Mothers with disabled children: needs, stress levels and family functionality in rehabilitation

Yılmaz

2019

Scandinavian Caring Sciences

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Scand J Caring Sci; 2020; 34: 524-532 Mothers with disabled children: needs, stress levels and family functionality in rehabilitation This study was planned to investigate the relationship between the needs, stress levels of mothers with disabled children and family functioning in rehabilitation. The study was conducted with 181 mothers in a private rehabilitation centre in eastern Turkey. The personal information form, 'Family Needs Assessment Tool (FNAT)', 'Perceived Stress Scale (PSS)' and 'Family Functioning Scale in Rehabilitation (FFSIR)' were used in the data collection. In the analysis of data number, percentage, mean score, standard deviations, Mann-Whitney U, Kruskal-Wallis tests and Spearman correlation were used. The mean score of the mothers on the whole FNAT was 67.49 AE 1.85; the mean score of them on the PSS was 24.99 AE 4.32; the mean score of them on the FFSIR was 153.98 AE 20.61. It was found that there was a positive correlation between the mean scores of the mothers on the FNAT and PSS while there was a negative correlation between the mean scores of them on the PSS and FFSIR (p < 0.05). There was a significant relationship between the socio-demographic characteristics of the mothers and the PSS and FFSIR (p < 0.05). It was determined that the mothers' information needs were high, they had moderate stress levels, and the family functionality was moderate in rehabilitation. It was concluded that the mothers' stress levels increased as the needs of them increased while their stress levels decreased as the functionality of them increased in rehabilitation.

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Information seeking by parents of children with physical disabilities: An exploratory qualitative study

Cited by 59 publications

References 40 publications

Bad news: Families’ experiences and feelings surrounding the diagnosis of Zika‐related microcephaly

Bad news: Families’ experiences and feelings surrounding the diagnosis of Zika‐related microcephaly

“If I had been given that information back then”: An interpretive description exploring the information needs of adults with cerebral palsy looking back on their transition to adulthood

Mothers with disabled children: needs, stress levels and family functionality in rehabilitation

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