Supporting Families of Children With Disabilities

Riley, Cheryl; Rubarth, Lori Baas

doi:10.1111/1552-6909.12660

Cited by 8 publications

(19 citation statements)

References 30 publications

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“…Within the theme of the impact of the diagnosis, there was an assumption that fatherhood would come naturally and the anticipation of a "healthy" child in keeping with societal expectations and cultural norms (Petts, Shafer, & Essig, 2018). Similar to prior research, fatherhood, for most, was being present at the birth of their "perfectly healthy" child (Riley & Rubarth, 2015). In the current study, fathers clearly articulated the excitement of being present at their child's birth but once the diagnosis was confirmed, fathers were often unprepared and transitioned from being a father, to being a father of a child with IDD.…”

Section: Discussionmentioning

confidence: 87%

The views and experiences of fathers regarding their young child’s intellectual and developmental disability diagnosis: Findings from a qualitative study

Marsh¹,

Brown²,

McCann

2020

Journal of Clinical Nursing

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Aims and objectives To report the views and experiences of fathers following their child's diagnosis of an intellectual and developmental disability (IDD). Background There is a growing interest in understanding the experiences of fathers of children with IDD given the transformation of the structural change of fathers’ roles within the family and wider society. Design A qualitative design was used to elicit the view and experiences of fathers. Methods A total of ten Irish fathers participated in face‐to‐face interviews. The data were thematically analysed. The COREQ guidelines for reporting qualitative studies were used in the development of this paper. Results The key themes that emerged were (a) the confirmation of the child's diagnosis (b) the impact of the diagnosis and (c) father's motivation to participate in disability research. Conclusions This study informs and develops a further understanding of the international evidence base of fathers receiving a confirmation of a child's diagnosis of an intellectual and developmental disability, the impact of the diagnosis on fathers and their motivation to share their stories to add to the disability research. Health and social care practitioners have important contributions to make in meeting the needs of fathers. There are specific areas to consider in terms of practice, education and research that require further attention and development to ensure fathers’ distinct needs regarding their child's diagnosis of IDD are known and responded to effectively. Relevance to clinical practice This study highlights that when the child's disability is confirmed, fathers experience a diverse range of mixed emotions. Health and social care practitioners including nurses need to be aware of the impact of the diagnosis upon fathers. There is scope to develop the knowledge, skills and confidence of health and social care practitioners regarding the experiences of fathers and how they can further support fathers and their families during the critical time of a disability disclosure.

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Section: Discussionmentioning

confidence: 87%

The views and experiences of fathers regarding their young child’s intellectual and developmental disability diagnosis: Findings from a qualitative study

Marsh¹,

Brown²,

McCann

2020

Journal of Clinical Nursing

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“…To our knowledge, there are currently no evidence-based interventions delivered within an ECIS to directly support the mental health of parents and carers of children with a disability. However, supporting mental health as well as providing child-related input is a key factor on the pathway to enabling their own, as well as their child’s, full participation in society and their community and to achieve positive health outcomes [60-62].…”

Section: Discussionmentioning

confidence: 99%

A Capacity Building Program to Improve the Self-Efficacy of Key Workers to Support the Well-Being of Parents of a Child With a Disability Accessing an Early Childhood Intervention Service: Protocol for a Stepped-Wedge Design Trial

Davis¹,

Young²,

Gilson³

et al. 2019

JMIR Res Protoc

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Background Early childhood intervention services support children with disabilities or developmental delays from birth to school entry with the aim to achieve optimal outcomes for children and their families. A transdisciplinary approach to delivering early childhood intervention, particularly the key worker model, is considered the best practice, where allied health professionals (eg, speech pathologists, physiotherapists, occupational therapists, psychologists, and special educators) and the family work together as a collaborative team to share information, knowledge, and skills across disciplinary boundaries, with a key worker coordinating and delivering most of the intervention to achieve the goals for the child and their family. Initial qualitative research demonstrated parents want their key worker to also support their mental well-being. Poor mental well-being of parents of a child with a disability is of relevance to key workers because of its association with poor child-related outcomes. One of the major challenges key workers report in supporting families is managing parent distress and, because of lack of confidence, is a secondary negative impact on their own well-being. Objective This trial has been developed in response to the negative cycle of low professional confidence to support parents’ mental health, increased key worker stress, and high turnover of employees working within a disability service setting. Methods A stepped-wedge design is used to deliver and evaluate a capacity building intervention program, over a 9-month period, for key workers to improve both parent and staff mental well-being. The primary outcome is key workers’ self-efficacy in supporting parental mental well-being. Secondary outcomes include manager self-efficacy in supporting key workers and staff perceptions of supervisory support, staff job-related mental well-being, parental satisfaction with their key worker, parental mental well-being, and cost-consequence of the program. Results This study was funded in October 2014, supported by an Australian National Health and Medical Research Council Partnership Project grant (Grant number 1076861). Focus groups and individual face-to-face interviews were conducted from February to November 2015 with 40 parents who have a child with a disability and 13 key workers to gain insight into how the disability service could better promote child and family health and well-being and to inform about the development of the trial. Conclusions The stepped-wedge study design is practical and ethical for research with a vulnerable population group of parents of a child with a disability, providing high quality data with all participants exposed to the intervention by the end of the trial. Trial Registration Australian New Zealand Clinical Trials Registry ACTRN12617001530314; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx...

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“…The diagnosis of child development disorder often comes as an unexpected news for parents. It is an extremely hard experience to deal with, causing parents to feel shocked, in denial, angry, scared, and anxious about the uncertain future of their children (Huang, Kellet, & Jhon, 2010;Marvin & Pianta, 1996;Fernăndez-Alcăntara, 2014;Riley & Rubarth, 2015;Schuengel, dkk, 2008;Lightsey & Sweeney, 2008).…”

Section: Introductionmentioning

confidence: 99%

The Experience of Hope for Mother with Speech Delay Children

Nur

Tairas

Hendriani³

2018

JEHCP

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Hope is an essential attribute for parents to build a positive perspective on children with developmental problems. Due to the importance of hope, this study explored the experience of hope for mother with speech-language delay children. Eight semi-structured interviews were conducted with six mothers and analysed the data using the constant comparative method as proposed by grounded theory. The results showed that mothers do experience changes in their hope about their child. Mother's hope is moving between unrealistic to realistic hope, which is influenced by various protective and risk factors. Unrealistic hope is the wrong hope that is not suitable for the child condition (wishful thinking), resulting in incorrect parenting processes. It also becomes a burden for the mother to make it happen. Realistic hope is the correct hope suitable for the child condition, resulting in correct parenting process and not be a burden for the mother to make it happen.

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Supporting Families of Children With Disabilities

Cited by 8 publications

References 30 publications

The views and experiences of fathers regarding their young child’s intellectual and developmental disability diagnosis: Findings from a qualitative study

The views and experiences of fathers regarding their young child’s intellectual and developmental disability diagnosis: Findings from a qualitative study

A Capacity Building Program to Improve the Self-Efficacy of Key Workers to Support the Well-Being of Parents of a Child With a Disability Accessing an Early Childhood Intervention Service: Protocol for a Stepped-Wedge Design Trial

The Experience of Hope for Mother with Speech Delay Children

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