The family needs of parents of preschool children with cerebral palsy: The impact of child's gross motor and communications functions

Bertule, Dace; Vētra, Anita

doi:10.1016/j.medici.2014.11.005

Cited by 14 publications

(13 citation statements)

References 18 publications

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“…Children with GMFCS levels IV and V, i.e., severely disabled or highly dependent group, require additional health care resources, higher cost of medications, and are presented with more frequent medical problems than those with GMFCS levels I, II and III [4]. Previous studies showed that the family of children with CP who are severely disabled are more likely to have greater needs [5][6][7][8][9] than family with less disabled children.…”

Section: Introductionmentioning

confidence: 99%

“…Previous studies which assessed the needs of family of children with CP or disability have reported several main needs which include the need for information about the condition of their children, treatment options, presently available services and the services they may receive in the future [6][7][8][9]. Additionally, these families require additional support, community services and financial aid for therapy and special equipment [6][7][8].…”

Section: Introductionmentioning

confidence: 99%

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The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy

Nordin

Shan

Zanudin

2019

IJERPH

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The overall care for children with cerebral palsy (CP) is challenging to the family which causes significant impacts to their livelihood. There is limited qualitative research that reports the unmet needs of parents with physically disabled children, especially highly dependent CP. The aim of this study was to explore the unmet needs of parents of highly dependent children with CP. A qualitative study using semi-structured face to face interviews was carried out among nine parents of children with CP with gross motor classification function score (GMFCS) levels III, IV, and V. The interviews were tape-recorded and transcribed verbatim. Transcribed data was analysed using thematic analysis method. Several unmet needs were highlighted by the parents; namely the needs in receiving information regarding CP conditions, getting psychological and financial support and explaining the child’s condition to strangers. In addition, parents expressed the need for better support from the social welfare department, as well as in effectively organising family functioning. The findings of this study indicate that there is a need for the healthcare professionals to develop suitable strategies to assist the parents of highly dependent children with CP in fulfilling their specific needs. The role of relevant agencies should be optimised in addressing this area of concern.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy

Nordin

Shan

Zanudin

2019

IJERPH

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“…Most parents need financial aid to pay for therapy, specialised equipment and childcare. The results showed that financial assistance and the provision of state and local government services are of key importance for families in our region [17]. It is known, however, that this type of help is not important for all parents with children who have CP.…”

Section: Int Conf Society Health Welfare 2014mentioning

confidence: 84%

“…Currently there is very little information about the presumptive determinants of family needs in terms of community and financial resources in our region. According to Bertule and Vetra, the gross motor ability of children has an impact on the need for community services and finances [17], but it is also known that the provision of healthcare services is determined by individual, societal and healthcare service system factors [18]. This means that it is not just the characteristics of children, but also those of families and services that must be considered as hypothetically protective and risk-related factors for family needs [13].…”

Section: Int Conf Society Health Welfare 2014mentioning

confidence: 99%

Predictors of needs for community and financial resources for families of pre-school children with cerebral palsy

Bertule

Vētra

2016

SHS Web Conf.

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Abstract. An understanding of predictors of family needs for the families of preschool children with cerebral palsy (CP) is important for provision of efficient and cost-effective services. The aim of this study was to identify the characteristics of children, families and services that are risk factors to meeting family needs for community and financial resources. 234 parents of pre-school children with CP completed a modified version of the Family Needs Survey (FNS), the Measure of Processes of Care (MPOC-20), and a demographic questionnaire. The gross motor function level and communication function level of children were classified on the basis of the Gross Motor Function Classification System (GMFCS) and the Communication Function Classification System (CFCS) respectively. Two hierarchical multiple regression models were generated to determine the predictors of unmet family needs. The socialisation and communication skills of children, as well as caregiver employment and family income levels were significant predictors of family needs for community resources (adjusted R2=0.44). Significant risk factors in terms of family needs for financial resources included the child's gross motor limitations, caregiver employment, low levels of family income and no ability to receive services on the basis of enabling and partnership principles (adjusted R2=0.51). A child's limitations in terms of communication, gross motor functions and socialisation, as well as the socioeconomic status of the child's family, must be taken into account when planning services for families with preschool children with CP.

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“…Provision of financial assistance through government or non-governmental sources would be a crucial factor to ensure an acceptable level of health care for these children. The need of financial assistance for families of children with special health care needs has been highlighted by other studies also (Bertule and Vetra, 2014).…”

Section: Discussionmentioning

confidence: 98%

A Profile of Children With Cerebral Palsy: Identifying Unmet Needs in Health and Social Care

Fernando¹,

Wannakukoralage²,

Athukorala³

et al. 2016

World Disability &Amp; Rehabilitation Conference

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Provision of care to a child with Cerebral Palsy (CP) requires individualized assessment and management of all associated problems. They need special education and their families need social support to face day-to-day demands of caregiving. We reviewed the characteristics of 375 children with CP attending Teaching Hospital, Karapitiya to identify their health problems and current level of health and social care utilization. Data were collected through questionnaire-based interviews with caregivers or extracted from child's medical records. The results revealed that approximately 2/3 rd of the children had spastic quadriplegic CP and 54% had some co-morbidity. The majority (30.9%) had 3-4 functional problems. Problems with mobility (77.6%), social activities of daily living (69.3%), bladder/bowel function (70.4%) and speech (57.9%) were the common functional problems. Learning difficulties were reported in 29.3%. Nearly 17% had behavioural and emotional problems. Approximately 98% of the children received physiotherapy. Despite higher numbers having problems with speech and activities of daily living, only 48% received speech therapy and less than 10% received occupational therapy. Among pre-school and school age children, over 70% had never attended school. Only 17.2% of school attendees received special education. Although nearly 70% was from rural, low socio-economic backgrounds, only 12.8% received any form of external financial support. We conclude that children with CP and their families have many unmet needs in the areas of therapy, special education and social support. These needs should be addressed adequately in developing long-term care plans for children with CP, in order to achieve better outcomes.

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The family needs of parents of preschool children with cerebral palsy: The impact of child's gross motor and communications functions

Abstract: Child's limitations in terms of communication and gross motor functions must be taken into consideration when planning services for families with preschool children with CP.

Cited by 14 publications

References 18 publications

The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy

The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy

Predictors of needs for community and financial resources for families of pre-school children with cerebral palsy

A Profile of Children With Cerebral Palsy: Identifying Unmet Needs in Health and Social Care

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