Lynn M. Breau

Understanding the importance of relationships Perspective of children with intellectual disabilities, their parents, and nurses in Canada

Effective and therapeutic relationships between health care providers and clients are important elements for positive health outcomes. Children with intellectual disabilities (IDs) and their parents face unique challenges in establishing relationships with health care providers due to social and institutional stigma and stereotypes associated with children with IDs. In this article, we discuss the theme of building relationships in a hospital setting that emerged from a qualitative feminist poststructuralist study conducted in Canada with 8 children with IDs, 17 mothers, and 12 nurses who cared for them. Our research provides examples of how nurses and mothers worked in and through the system sometimes with frustration but also sometimes with positive excitement to develop supportive relationships. We can learn from these moments of tension and moments of success about how to work together to ensure positive relationships are provided to children with IDs, their parents, and health care professionals.

Diagnoses, labels and stereotypes Supporting children with intellectual disabilities in the hospital

Children with intellectual disabilities (IDs) and their parents continue to experience stigma within health-care systems. Whilst some research studies have examined the stigma associated with children who have IDs, there continues to be a gap in understanding how the experiences of these children, their parents and nurses have been constructed personally, socially and institutionally. Face-to-face semi-structured interviews were conducted with 17 mothers, 12 nurses and 8 children. Feminist post-structuralism and discourse analysis were used to examine the experiences of children, parents and nurses with the intent of understanding the dominant taken-for-granted everyday practices as well as hidden or marginalized practices. Four main themes emerged, which included the theme of Diagnoses, Labels and Stereotypes, which will be discussed in this article. Participants provided rich detail about their experiences in the hospital and how they addressed and often attempted to challenge the stigma associated with children with IDs.

Observer perceptions of pain in children with cognitive impairments: vignette development and validation.

AIM Develop vignettes depicting different pain types in verbal and nonverbal children with cognitive impairments that could help examine pain assessment and management decisions of secondary caregivers, and conduct initial convergent and divergent validity analyses. METHODS For six vignettes, 76 undergraduate students (38 females, mean age = 19.55) rated (0-10): pain intensity, difficulty rating pain intensity, need for medical attention and need for other attention (e.g., physical comfort). RESULTS Ratings significantly varied by pain source (e.g., headache was rated more painful than injections). Verbal ability did not impact ratings. CONCLUSION Vignettes could serve as an alternative method to study pain decisions by caregivers of children with cognitive impairments when ethical barriers limit more naturalistic research.

Social Communication Features in Children following Moderate to Severe Acquired Brain Injury: A Cross-Sectional Pilot Study

We compared the social communication deficits of children with moderate to severe acquired brain injury or autism spectrum disorder, while accounting for the role of attention-deficit hyperactivity disorder (ADHD) symptoms. Parents of 20 children aged 6 to 10 years (10 acquired brain injury; 10 autism spectrum disorder) completed the Social Communication Questionnaire, and Conners 3 Parent Short. A multivariate analysis of covariance revealed significant differences between groups in Social Communication Questionnaire restricted repetitive behavior scores, but not reciprocal social interaction or social communication. Multiple linear regressions indicated diagnosis did not predict reciprocal social interaction or social communication scores and that Conners 3 Parent Short Form hyperactivity scores were the strongest predictor of Social Communication Questionnaire reciprocal social interaction scores after accounting for age and Intelligence Quotient. The lack of difference in social communication deficits between groups may help in understanding the pathophysiology underlying the behavioral consequences of acquired brain injury. The link between hyperactivity and reciprocal interaction suggests that targeting hyperactivity may improve social outcomes in children following acquired brain injury.

Education creates comfort and challenges stigma towards children with intellectual disabilities

Children with intellectual disabilities (IDs) are frequent users of the healthcare system, yet nurses report they receive little education regarding specialized medical, social and relational needs of this population. Therefore, parents take on a greater burden of care while their child is in hospital than do parents of typically developing children. This article reports findings from a qualitative study that used feminist poststructuralism to examine the hospital experiences of eight children with IDs, 17 mothers and 12 nurses. Nurses and mothers reported a lack of knowledge and education regarding the healthcare of children with ID and identified a need for more education. Participants noted that physical care of children with ID was prioritized as more important than communication and relationships. This unintentional prioritization was socially and institutionally constructed through stigma and stereotypes about people with IDs. Nurses and parents offered suggestions to access and increase ID education for healthcare professionals.

Corrigendum to “Caring for children with intellectual disabilities part 1: Experience with the population, pain-related beliefs, and care decisions” [Res. Dev. Disabil. 62 (2017) 197–208]

The authors would like to clarify that beyond being submitted concurrently, “part two” of this manuscript has been published in Research in Developmental Disabilities. The relevant citation for part two of this manuscript is: Genik, L. M., McMurtry, C. M., & Breau, L. M. (2017). Caring for children with intellectual disabilities part 2: Detailed analyses of factors involved in respite workers’ reported assessment and care decisions. Research in Developmental Disabilities, 63, 1–10. The authors would like to apologise for any inconvenience caused.

Caring for children with intellectual disabilities part 2: Detailed analyses of factors involved in respite workers’ reported assessment and care decisions☆

Respite workers (RW) commonly care for children with intellectual disabilities (ID), and pain is common for these children. Little is known about factors which inform RW pain assessment and management-related decisions. OBJECTIVES To describe/determine the following in response to a series of pain-related scenarios (e.g., headache, falling): (1) factors considered important by RW when assessing children with IDs pain; (2) whether childrens verbal ability impacts pain assessment factors considered; (3) RW assessment and management approach. PARTICIPANTS Fifty-six RW (18-67 years, Mage=33.37, 46 female). PROCEDURE/MEASURES In an online survey, participants read and responded to six vignettes manipulating child verbal ability (verbal, nonverbal) and pain source. RESULTS The factors most frequently considered when assessing pain were child behavior (range: 20-57.4%), and history (e.g., pain, general; 3.7-38.9%). Factors did not vary by childs verbal ability. RW indicated varied assessment and management-related actions (range: 1-11) for each scenario. DISCUSSION Findings suggest: a) factors informing pain assessment did not depend on whether or not the child was verbal and b) a degree of flexibility in RW response to pain across situations. While these findings are encouraging, ensuring RW have adequate pain assessment and management knowledge specific to children with ID is critical.

Parents of non-verbal children with learning disability (LD) most commonly recognise their child’s pain through vocalisations, social behaviour and facial expressions

Commentary on: Solodiuk JC. Parent described pain responses in nonverbal children with intellectual disability. Int J Nurs Stud 2013;50:1033–44.[OpenUrl][1][CrossRef][2][PubMed][3] Assessing pain in children who are non-verbal and have learning disability (LD) is challenging. Yet these children experience frequent and significant pain because of complex concomitant health conditions.1 It is widely perceived that pain responses in these children are idiosyncratic and parents report that ‘knowing’ their child is an … [1]: {openurl}?query=rft.jtitle%253DInt%2BJ%2BNurs%2BStud%26rft.volume%253D50%26rft.spage%253D1033%26rft_id%253Dinfo%253Adoi%252F10.1016%252Fj.ijnurstu.2012.11.015%26rft_id%253Dinfo%253Apmid%252F23245455%26rft.genre%253Darticle%26rft_val_fmt%253Dinfo%253Aofi%252Ffmt%253Akev%253Amtx%253Ajournal%26ctx_ver%253DZ39.88-2004%26url_ver%253DZ39.88-2004%26url_ctx_fmt%253Dinfo%253Aofi%252Ffmt%253Akev%253Amtx%253Actx [2]: /lookup/external-ref?access_num=10.1016/j.ijnurstu.2012.11.015&link_type=DOI [3]: /lookup/external-ref?access_num=23245455&link_type=MED&atom=%2Febnurs%2F17%2F4%2F111.atom