An exploratory study: The effects of sleep systems on sleep quality, pain and carer goals for non-ambulant children and young people with cerebral palsy

Wood, Nicola; Brown, Sarah

doi:10.1177/20556683211070729

Cited by 2 publications

(2 citation statements)

References 35 publications

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“…Health care specialists should encourage the family to connect with a GP and a relevant patient organization. Simple measures such as introducing a symptom diary [ 29 , 30 ] whenever pain is recognized and offering feasible educational material might contribute to enhanced family empowerment, common language on pain and shared decisions on pain management.…”

Section: Discussionmentioning

confidence: 99%

Daytime contacts and general practitioner consultations, and pain as a reason for encounter in children with cerebral palsy; a Norwegian national registry linkage study

Larsen

Eide

Brunborg

et al. 2022

Scandinavian Journal of Primary Health Care

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Background: Cerebral palsy (CP) is the most common disorder of movement and posture in childhood, often accompanied by secondary challenges in cognition, epilepsy, and pain. Reports show that up to 75 % of all children with CP have pain, and that pain is often undertreated. Thus, pain has been considered a major challenge in care for children with CP since it influences health-related quality of life (HRQoL) negatively. The knowledge base on pain in children with CP is constantly increasing. Still, longitudinal studies on pain and HRQoL are scarce. Many different health care professions are involved in care for children with CP. Still, it is unknown if children with CP encounter a general practitioner (GP), or if they seek GP advice when in pain.Aims: The overall aim of this PhD thesis was to investigate pain and pain management in children with CP outside hospital. We investigated possible changes in pain, hip pain and HRQoL and relevant factors that could be associated with these variables, in a cohort of children, now youth with CP who were dependent on waking aid and who followed national CP surveillance program (Paper I-III). We also investigated if a diagnosis of CP in children ( 0-17 years) influenced the frequency of daytime contacts and consultations with a GP, and the frequency of pain as a reason for consultation (Paper IV). Methods: Papers I-III are based on a follow-up study with both cross-sectional and longitudinal design. All non-ambulatory children registered in Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP) with bilateral CP, GMFCS levels III to V, born 2002-2006, living in South-Eastern Norway were invited to participate. Two identical data collections were performed five years apart, in childhood (7-12 years) and adolescence (12-17 years). One primary caregiver responded on behalf of each participant at both time points. Pain last four weeks was assessed using questions on pain frequency and intensity from Child Health Questionnaire (CHQ), a body map to localize pain sites and two questions on pain interference with activities of daily living and sleep from the Brief Pain Inventory (BPI), and an interview on pain, hip pain and the use of first-line analgesics. Hip displacement was measured on radiographs of the pelvis taken through NorCP. HRQoL was assessed using five of six CPCHILD domains. Paper IV is based on a registry study of GPs' daytime contacts available from the Norwegian Directorate of Health's database for the control and reimbursement of health expenses. All daytime contacts with regard 9 to type of contact and reason for encounter (RFE), in period 2006-2018 were analyzed for persons born in 1996 -2012. Linkage to NorCP identified children with CP. Comparison was performed between children registered in NorCP and children not registered in NorCP.Results: Papers I-III: Pain and hip pain were assessed twice in 67 children. The prevalence of recurrent pain, number of pain sites, pain intensity and frequency, and pain interference with activities of daily livin...

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Section: Discussionmentioning

confidence: 99%

Daytime contacts and general practitioner consultations, and pain as a reason for encounter in children with cerebral palsy; a Norwegian national registry linkage study

Larsen

Eide

Brunborg

et al. 2022

Scandinavian Journal of Primary Health Care

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“…Это, в свою очередь, улучшает качество сна у родителей и тем самым снижает их РС. [89]. Уровень РС сильно зависит от восприятия родителем ребенка с ДЦП.…”

Section: стресс связанный с ролью родителяunclassified

Parental Stress and Bringing up a Child with Cerebral Palsy: A Foreign Studies Review

Kim

Kadyrov

2022

Клиническая И Специальная Психология

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<p style="text-align: justify;">Raising a child with cerebral palsy contains difficult stress, which negatively affects everyone who is involved in this process. In native psychology, this problem is described by I.U. Levchenko, V.V. Tkacheva, V.A. Vishnevsky, T.N. Volkovskaya. However, there is a lack of research on stress for people, who are raising a child with cerebral palsy. The purpose of this review is to learn about foreign studies on stress for people, who are raising children with cerebral palsy. The article describes R. Abidin's current leading model for parental stress. The connection between raising a child with cerebral palsy and parental stress is considered based on R. Abidin's model. Particularly, the results of studies describe specific aspects of parental stress: lack of knowledge on special child care, not an equal assignment for parental responsibilities, separation anxiety, parent's health problems, social isolation, and guilt. Based on the analysis, we can conclude that raising a child with cerebral palsy is associated with a higher level of stress than raising children without disabilities. This information can be used both in similar studies for a domestic sample and in active programs to reduce parental stress.</p>

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An exploratory study: The effects of sleep systems on sleep quality, pain and carer goals for non-ambulant children and young people with cerebral palsy

Cited by 2 publications

References 35 publications

Daytime contacts and general practitioner consultations, and pain as a reason for encounter in children with cerebral palsy; a Norwegian national registry linkage study

Daytime contacts and general practitioner consultations, and pain as a reason for encounter in children with cerebral palsy; a Norwegian national registry linkage study

Parental Stress and Bringing up a Child with Cerebral Palsy: A Foreign Studies Review

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