Assessment of Family Environment and Needs of Families Who Have Children with Cerebral Palsy

Saygı, Evrim Karadağ; Giray, Esra; Cerşit, Hülya Peynirci; Ulutatar, Fırat; Aydın, Resa

doi:10.5152/tftrd.2015.70745

Cited by 5 publications

(7 citation statements)

References 19 publications

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“…[13] Our contrasting results can be explained by a previous study conducted in Turkey, showing that most Turkish mothers did not work and did not report finding a caretaker to look after their child, when they needed to leave their child to go somewhere. [9] It was shown that children who experienced more pain had a lower QoL. As a child's pain levels increased, their mother's QoL decreased and their levels of depression increased.…”

Section: Discussionmentioning

confidence: 99%

“…Level 5: There is severe limitation of movement even with the use of assistant devices. [9] Non-communicating children's pain checklist-revised This checklist is applicable to the GMFCS Levels 1-5. [7] This questionnaire was designed to assess the pain level and types of reaction to pain in children with CP.…”

Section: Each Level Is Summarized As Followsmentioning

confidence: 99%

“…The NHP consists of six subsections that assess emotional, social, and physical health problems, as perceived by the patient. This questionnaire consists of a total of 38 questions, including some that assess energy level, [4] pain, [9] physical activity, [9] sleep, [6] emotional reactions, [10] and social isolation, [6] and are answered Yes/No. The number of questions answered "Yes" in each subgroup is divided by the total number of questions in the same subgroup and the result is multiplied by 100.…”

Section: Nottingham Health Profilementioning

confidence: 99%

“…[7] Several studies have shown that psychosocial problems are present in primary caregivers, and the parents of children with CP have worse physical and emotional health than the parents of normal, healthy growing children. [8][9][10] The functional and psychosocial problems experienced by children with CP can negatively affect the QoL of both the child and the caregiver, and pain in these children also has important consequences in this respect. [10,11] Therefore, it is of utmost importance to evaluate pain and to identify CP patients who are at risk of pain.…”

mentioning

confidence: 99%

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Pain evaluation in a sample of Turkish children with cerebral palsy and its association with dependency level, verbal abilities, and the quality of life of patients and sociodemographic status, depression, and quality of life of their caregivers

Giray

Şimşek

Aydoğduoğlu

et al. 2018

Turk J Phys Med Rehab

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The study results were submitted as oral presentation at the 16 th Marmara University Student Congress (MASCO) on May 2016, İstanbul, Turkey and was awarded the Best in Oral Presentation. Also the study was accepted for oral presentation at the 26 th National Physical Medicine and Rehabilitation Congress on April 2017, Antalya, Turkey. Cerebral palsy (CP) is a group of permanent impairments of movement and posture development that result in activity restrictions caused by nonprogressive disturbances that occurred in the developing fetal or infant brain. [1] The actual brain damage does not progress, which differentiates CP from similar conditions. The brain damage occurs in parts of the brain that affect muscle tone, gross and fine motor functions, balance, control, reflexes, and posture. These are mainly orthopedic in nature and are considered primary conditions of CP. Primary conditions which are a direct result of ABSTRACT Objectives: This study aims to evaluate pain in children with cerebral palsy (CP), to investigate its association with dependency level, verbal abilities, and the quality of life (QoL) of children and sociodemographic status, depression levels, and QoL of their caregivers.

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Section: Discussionmentioning

confidence: 99%

Section: Each Level Is Summarized As Followsmentioning

confidence: 99%

Section: Nottingham Health Profilementioning

confidence: 99%

mentioning

confidence: 99%

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Pain evaluation in a sample of Turkish children with cerebral palsy and its association with dependency level, verbal abilities, and the quality of life of patients and sociodemographic status, depression, and quality of life of their caregivers

Giray

Şimşek

Aydoğduoğlu

et al. 2018

Turk J Phys Med Rehab

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“…Difficulties were also reported by caregivers of children with CP in terms of lack of access to services, in particular on account of distance, cost and lack of availability. The information needs of parents were cited in one study as being greater than financial or other support needs [28]. Of the different types of information gaps, information about the 'child's condition' and information about the 'institutions that the child can benefit from' were the two most frequently reported [28].…”

Section: No Correlation Between Gmfcs Level I Iimentioning

confidence: 99%

Congenital Zika Syndrome—Assessing the Need for a Family Support Programme in Brazil

Duttine

Smythe

Sá³

et al. 2020

IJERPH

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The Zika outbreak in Brazil caused congenital impairments and developmental delays, or Congenital Zika Syndrome (CZS). We sought to ascertain whether a family support programme was needed and, if so, could be adapted from the Getting to Know Cerebral Palsy programme (GTKCP) designed for children with cerebral palsy (CP). We conducted a systematic review of the needs of families of children with CZS or CP in low- and middle-income countries and reviewed the findings of the Social and Economic Impact of Zika study. We undertook a scoping visit to three facilities offering services to children with CZS in Brazil to understand potential utility and adaptability of GTKCP. The literature review showed that caregivers of children with CZS experience challenges in mental health, healthcare access, and quality of life, consistent with the CP literature. The scoping visits demonstrated that most support provided to families was medically orientated and while informal support networks were established, these lacked structure. Caregivers and practitioners expressed an eagerness for more structure community-based family support programmes. A support programme for families of children with CZS in Brazil appeared relevant and needed, and may fill an important gap in the Zika response.

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How congenital Zika virus impacted my child’s functioning and disability: a Brazilian qualitative study guided by the ICF

et al. 2020

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IntroductionThe Zika virus outbreak in Brazil has had devasting social, medical and financial consequences for families. Both researchers and clinicians are measuring longer-term outcomes to understand the impact of the Zika on child development, functioning and disability. Outcomes and tools used to measure them are very varied and we are unclear how meaningful they are to families and children. This study aimed to identify the parents’ perspectives on relevant areas of functioning and disability that should be included as outcome measures for children with congenital Zika syndrome (CZS), as guided by the International Classification of Functioning, Disability and Health (ICF).MethodsThis qualitative study included parents or caregivers of children aged 0–5 years with confirmed CZS from two states in northeastern Brazil. Interviews were conducted using focus groups. Content mapping followed the WHO’s ICF linking rules. Three raters analysed the content using NVivo V.11.ResultsThirty-two caregivers participated in six focus groups, 88% were mothers with an average age of 30 years. Most children were male (59%) and all were level V (severe) to on the Gross Motor Function Classification System (GMFCS). Overall, 825 themes were mapped to 36 ICF categories. Although parents mentioned areas across all ICF domains, they reported that areas of mobility, eating and recreation were most relevant for them. In addition, environmental factors were highly identified as barriers, specifically services, policies and access to assistive devices. The most predominant facilitators within the environment were; immediate family support, kind relationships with therapists and support from the extended family.ConclusionsAlthough parents emphasised issues related to mobility, their greatest concerns involved environmental factors, such as access and quality of health and social services, systems and policies. These results reinforce the importance of including parents’ perspectives when selecting or developing outcome measures for CZS.

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Assessment of Family Environment and Needs of Families Who Have Children with Cerebral Palsy

Cited by 5 publications

References 19 publications

Pain evaluation in a sample of Turkish children with cerebral palsy and its association with dependency level, verbal abilities, and the quality of life of patients and sociodemographic status, depression, and quality of life of their caregivers

Pain evaluation in a sample of Turkish children with cerebral palsy and its association with dependency level, verbal abilities, and the quality of life of patients and sociodemographic status, depression, and quality of life of their caregivers

Congenital Zika Syndrome—Assessing the Need for a Family Support Programme in Brazil

How congenital Zika virus impacted my child’s functioning and disability: a Brazilian qualitative study guided by the ICF

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