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ASSESSING THE UNMET NEEDS AMONG CAREGIVERS OF CHILDREN WITH DISABILITIES AT THE COMMUNITY-BASED REHABILITATION CENTRES IN SELANGOR
Abstract
Caregivers may experience the need for information, social support, a range of services and financial support in caring for children with disabilities. However, some of these needs are unmet. This study aims to determine the perceived unmet needs among caregivers of children with disabilities at the Community-based Rehabilitation centre (CBR). A cross-sectional study was carried out among a total of 337 caregivers, who were recruited from 12 CBR centres in Selangor. The unmet needs were assessed using Family Needs Survey (FNS) questionnaire, which included six subscales of needs such as need for information, social support, community services, explaining to others, financial support and family functioning. Caregivers identified the need for information that the child might receive in the future as their greatest need (94.4%) and the least was the need for getting more counseling or help in getting a job (16.3%). The mean score for the overall unmet needs was 18.67 (SD=7.623). Out of six subscales of FNS, the need for information had the highest rating which was 98.3%, followed by need for social support (93.4%), need for community services (84.0%), need for financial support (79.9%), need for family functioning (61.8%) and need for explaining to others (46.2%). The unmet needs varied within the subscales. Therefore, more effective intervention programs are needed in community-based rehabilitation centres to match or reduce those varied unmet needs in order to allow caregivers to provide better care for their children with disabilities.
... Despite the current support delivered by the governmental and non-governmental agencies in providing different means of benefit towards children with disabilities in Malaysia, the caregivers still expressed their concern about having an intervention that provides more social support especially support from other parents whose children had a similar condition (Sy & Ms, 2011). The same challenges and everyday experiences they face in handling their disabled children could establish the similarity between them, and they could support each other hand in hand. ...
... The same challenges and everyday experiences they face in handling their disabled children could establish the similarity between them, and they could support each other hand in hand. The caregivers also requested for interventions that provide more information about their child's growth and development, child's condition, how to handle the child's behavior, how to play, talk or teach their child as well as services presently available for their child (Sy & Ms, 2011). This is due to caregivers reported that they have difficulty in obtaining information or have little access to the information they needed because they failed to get help and have no idea where to acquire the information needed (Sy & Ms, 2011). ...
... The caregivers also requested for interventions that provide more information about their child's growth and development, child's condition, how to handle the child's behavior, how to play, talk or teach their child as well as services presently available for their child (Sy & Ms, 2011). This is due to caregivers reported that they have difficulty in obtaining information or have little access to the information they needed because they failed to get help and have no idea where to acquire the information needed (Sy & Ms, 2011). ...
Cerebral palsy (CP) is a lifelong disorder that requires a fulltime commitment from the caregivers. Due to the complexity of care and complications associated with CP, the caregivers of children with CP require a good social support. This study aimed to determine the impact of CP support intervention on caregivers perceived social support.This quasi-experimental study involved caregivers of children with CP from community-based rehabilitation (CBR) centers. The intervention group (n=21) were given CP Support intervention through provision of information and social support from a multidisciplinary team including governmental, non-governmental organizations (NGO) and parents. It contains information enrichment workshop (IEW), caregivers support group (CSG), and WhatsApp group. The control group (n=45) received only usual care. Factorial ANCOVA revealed that higher level of perceived social support was observed in the intervention group at the end of the study. The intervention effect was significant after six months post intervention when other variables were controlled (p = 0.031). Findings of this study highlighted the favorable outcome of the CP Support intervention program on the caregivers’ perceived social support through provision of information and social support.
... In the present study, several caregivers had encouraging experience where the dental personnel discussed with them in constructing a treatment plan and in making decision for their children. The approach empowers them and decreases the feeling of powerlessness and uncertainty among the caregivers (Suriati et al., 2011). ...
... Providing basic essentials for children with CP place a financial implication for the caregiver (Davis et al., 2010;Sukeri et al., 2017). Most of the caregivers needed financial help for purchasing food or special equipment for their child with disability (Suriati et al., 2011). Consistent with Suriati et al. (2011), the caregivers experienced financial implication in providing basic necessities such as formula milk, diapers and supplementary diet for their children with CP. ...
... Most of the caregivers needed financial help for purchasing food or special equipment for their child with disability (Suriati et al., 2011). Consistent with Suriati et al. (2011), the caregivers experienced financial implication in providing basic necessities such as formula milk, diapers and supplementary diet for their children with CP. During the interviews, several caregivers revealed that accompanying and attending their children with CP to their dental appointments would incur additional living cost such as for parking service and fuel for their transport. ...
Maintaining oral health (OH) is a serious issue in children with cerebral palsy (CP) for their inability to perform effective OH care as well as for lack of accessibility to dental services. This study explored the experience of the caregivers on accessibility towards OH facilities for their children with CP in Kota Bharu, Kelantan. A purposive sampling technique was utilised. In-depth interviews using guided questions captured with audio-recorder were conducted on caregivers of children with CP. Verbatim transcription of the interviews were reviewed with field notes, and themes were developed using NVivo software.Ten caregivers of children with CP aged 32–64 years old participated, which were mostly from low socio-economic status and low level of education. The age of children with CP in this study were between nine to 18 years old. From the ten verbatim transcripts, five themes emerged which were dental experience, family support, mobility, ability to pay and social value. The caregivers experienced both demanding and unique challenges in acquiring OH care services for their children with CP according to their experiences in obtaining OH services in Kota Bharu, Kelantan. Therefore, attentions are needed to address these problems that are hindering the access to OH facilities for children with CP.
... More than half of the mothers (67.4%) came from a middle-income family. Suriati et al. [31], found about two-thirds of parents of disabled children earned less than RM2000 per month. A majority of the parents voiced their concern about their children's future especially when they are not around anymore [31]. ...
... Suriati et al. [31], found about two-thirds of parents of disabled children earned less than RM2000 per month. A majority of the parents voiced their concern about their children's future especially when they are not around anymore [31]. A third of the mothers were unemployed (31%). ...
... Many of the disabled children were not registered [35]. With regard to the caregivers, a majority lacked information regarding their children's condition, mainly from the lowerincome group [31]. The parents did not know their children's diagnoses, how to handle behavioural problems, the services or treatment available for the children as well as the support system for them [31]. ...
Mothers with disabled children are at risk of psychological disturbances. There is a dearth of such studies in Malaysia. The Depression, Anxiety, Stress Scale 21 and Medical Outcomes Study 36-item Short-Form was answered by 184 mothers selected via systematic random sampling from 10 Klang special education programs using The Mini-International Neuropsychiatric Interview v5.0 to generate psychiatric diagnoses. The results revealed 28.8% mothers had depression, 9.2% had anxiety disorder while 29.3% were psychologically distressed. The mothers' quality of life was poor; all the domains scored less than 50%. Marital conflict (AdjOR=7.57, 95%CI 2.85-20.13), monthly income (AdjOR=8.14, 95%CI 2.58-27.48), children's diagnoses (AdjOR=8.4, 95%CI 0.77-93.44) and family history of mental illness (AdjOR=7.82, 95%CI 1.87-32.64) were significantly associated with depression and similarly for psychological distress. Marital conflict (AdjOR=5.20, 95%CI 1.85-14.62) was also significantly associated with anxiety disorders. The findings are consistent with studies elsewhere, indicating screening is fundamental to enable intervention.
... Additionally, these families require additional support, community services and financial aid for therapy and special equipment [6][7][8]. Two Malaysia-based studies investigating the needs of caregivers of children with disabilities using questionnaires (i.e., 20-item Caregiver Needs Scale and Family Needs Survey) reported that caregivers, particularly those who have children with multiple disabilities, needed more assistance in getting information and require support in coping with the burden of care [10,11]. However, these previous studies involved caregivers with children with not just physical disabilities such as CP but other conditions such as learning, vision and hearing problems, hence limiting the interpretation of the findings. ...
... To date, previous studies on the topic of family needs of children with CP or disability have been conducted using a quantitative approach with the use of questionnaires [6][7][8][9][10][11][12][13]. This approach limits the retrieval of information from the parents as they are restricted in expressing their thoughts and opinion in a more detailed way. ...
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.
... 11 They have a range of unmet needs that can hinder their ability to provide optimal care for their children. These unmet needs are multifaceted, encompassing informational 12,13 , emotional, financial 14 , social [8][9][10] , and family functioning aspects. 15 Mothers, in particular, are often primarily responsible for caring for CWE. ...
INTRODUCTION: Unmet needs arise when everyday assistance is lacking. Epilepsy's unpredictability creates significant work-family conflict for working women, potentially leading to increased unmet needs. This study aimed to determine the prevalence and the factors related with the unmet needs of working mothers with children with epilepsy (CWE) in Kelantan. MATERIALS AND METHODS: A crosssectional study using the validated Malay version of the Family Needs Survey questionnaire was conducted among 204 working mothers aged 18 to 60 of CWE attending specialist hospitals in Kelantan. Data were analysed using descriptive statistics and multiple linear regression. RESULTS: The highest unmet need was for community services (81.6%), followed by information (71.9%), social support (53.1%), financial (43.2%), explaining to others (28.9%), and family functioning (28.4%). Having follow-ups at tertiary hospitals reduced the unmet need score for information (B=-0.669, 95%CI=-1.276,0.081, p=0.021) and social support (B=-1.454, 95%CI=-2.225, -0.683, p=<0.001). Living in nuclear types of family reduced the unmet need score for community services (B=-0.669, 95%CI=-1.276,0.081, p=0.021) and information (B=-1.216, 95%CI=-1.965,-0.466, p=0.002). Working in the government sector increased the unmet need score for social support (B=0.437, 95% CI=0.062, 1.454, p=0.033). Full-time employment (B=-0.761, 95%CI=-1.244,-0.279, p=0.002) reduced the unmet need score for family functioning. Contract employment status (B=0.566, 95%CI=0.074,1.058, p=0.024) increased the unmet need score for family functioning. CONCLUSION: Mothers of CWE working in the government sector, under contract employment, and seeking follow-up care in secondary hospitals were related to higher unmet needs. The study findings may assist policymakers in introducing a child-friendly employment policy and flexible working arrangements among working parents of children with chronic illnesses such as epilepsy.
... Parents were required to allocate additional time to attend to their children's needs, such as ensuring proper nutrition, sanitation, washing, and engaging in therapeutic activities [11]. This finding is consistent with a recent study which indicated that parents should allocate additional time to assist their children in activities such as eating, dressing, walking, and other tasks [12]. ...
... Parents also had to spend more time with the children by spending a lot of time taking care of their eating, hygiene, bathing, delivering therapeutic activities (Faramarzi, 2017). This was supported by previous study that stated parents needed to spend extra time supporting the children to eat, dress, walk, and perform another activity (Suriati et al., 2011). ...
Psychological distress referred to an emotional suffering state characterized by depression such as lost interest and hopelessness and anxiety symptoms such as felt tension and restlessness. Parents of children with special needs were likely to be at a higher risk of psychological distress since they might experience many challenges to raise the children. t The long-term issues of children with physical-motor disorders and mental retardation and the need for continuous treatment, these parents would experience high levels of stress and frequently became depressed, frustrated, and disappointed with their children development This study aimed to identify the severity of psychological distress of the parents among special needs children and the relationship between demographic variables and parents' psychological distress among special needs children. A total of 224 parents with special needs children in Terengganu were involved. The psychological distress of parents was measured by using Kessler Psychological Distress Scale (K10). Results indicated 36.6% of parents were having severe distress, 21% were experiencing moderate distress and, 21.9% had mild distress. Parent’s job status had indicated a positive significant correlation between severity of psychological distress (r = 0.148, N = 224, p < 0.05). The other variables such as parent's age, parent’s gender, child’s age and diagnosis, parent’s marital status, and parent's education level had shown no significant correlation between the severities of psychological distress. In conclusion, most parents were having psychological distress. Nevertheless, only the job status had demonstrated an impact on the psychological distress of parents.
... The studies by Shirley et al. [9] and Suriati et al. [10] show that parents of children with physical disabilities are experiencing psychosocial problems including guilty, grief, and discrimination from community members. Some of the challenging aspects of caring for these children include excessive caring burden, less quality time with family members, handling sibling problems, education, and future concerns, as well as financial difficulties. ...
The well-being of children with physical disabilities is highly dependent on the absence or reduction of the caregiving burden on caregivers. This study aimed to investigate the social, cultural, and economic challenges facing caregivers in the provision of social well-being to children with Physical Disabilities supported by MAWAKI organization in Kilolo District, Iringa region, Tanzania. The study adopted a case study design where interviews and Focus Group Discussions (FGDs) were used to collect information from the caregivers of children with physical disabilities, MAWAKI organization staff, and Village Executive Officers (VEOs). The thematic analysis was used to analyze qualitative information collected from the respondents. From the study findings, it is concluded that the social challenges facing the caregivers of children with physical disabilities include inadequate availability of social programs, marriage conflicts, and poor family relationships. The cultural challenges identified by the study to affect caregivers of children with disabilities were community negative attitudes, perceptions, and beliefs towards children with disabilities. On the other hand, the existence of poor financial support, and the high cost of health and transport services were concluded as the economic challenges facing caregivers of children with physical disabilities. Therefore, the study recommended that caregivers needed to be provided with affordable social and economic support services together with the existence of effective implementation of government policies and laws related to disabled people in Tanzania.
... Many parents are frustrated and disappointed when they fail to gather relevant information about their children's diagnosis, management, treatment and rehabilitation from health professionals (Moore and Bedford 2017). A survey was conducted by Sidek et al. (2011) on 337 caregivers recruited from CBR centres in Selangor reported that 94.4% of parents experienced unmet needs for information about the services for their CWD in future, followed by unmet needs for information about CWD development (92.4%) and education (88.2%). Caregivers expressed their need for assistance in identifying what they should know and what kind of resources are available for their CWD. ...
Despite the introduction of the various disability support systems by the government and non-governmental organisations, Malaysian parents are still struggling to care for their children with special needs. Among the difficulties faced are restricted access to healthcare and rehabilitation services, poor quality of care, financial constraints and commitment burden due to long hours of care provision. The similarities and differences in parenting children with disabilities in Malaysia and other countries are discussed in this study. While most barriers transcend different contexts, some are culturally specific. Discussions also include psychological distress experienced by parents due to expectations, anxiety over their children's future and family disharmony. Aiming to alleviate distress, the effectiveness and benefits of coping mechanisms based on religion and parent support groups are introduced. Suggestions are also proposed on what the government can do to improve the support system in Malaysia. In conclusion, the importance of parental involvement in developing a support system and policymaking is highlighted. Investigations on access to special needs services among parents from vulnerable and minority groups are recommended for future research.
Objective - Caregiving of a child with special needs can increase the cost of raising the child and parent’s stress. These two issues are commonly experienced by a parent who care for their special needs child themselves and the thought of challenges are different based on the disability of the child. Methodology/Technique – The challenges of raising a child with disability make it necessary for parents to work harder to to meet the cost of treatment. Meanwhile, levels of stress among those parents are understandably increased. Finding – Parents caring for a child with disability need to place greater emphasis on achieving a balance between their work, caring for their child and stress. Further, this paper includes a discussion on the cost of raising a disabled child and the increased levels of stress experienced by these parents. Novelty - The findings of this paper contribute to conceptual model on the challenges faced by Malaysian parents in caregiving for a child with special needs. Type of Paper: Review
Objectives: The present study aimed to determine the barriers that deter mothers of children with disabilities from attaining their unmet needs.
Methods: In-depth interviews of 12 mothers of children with disabilities were conducted from November 2014 to January 2015 in Kelantan, Malaysia. The mothers were recruited by purposive sampling. Thematic analysis was used for identifying, analysing and reporting the data.
Results: Barriers to the unmet needs among mothers of children with disabilities were found to stem from the mothers' expectation and further propagated by lack of support, the role of healthcare professionals in providing care, inappropriate policies and shortage of resources required for survival and maintaining care.
Conclusions: Identification of the barriers to the attainment of unmet needs among mothers of disabled children is crucial for resolving the issue of unmet needs. Deeper understanding of these barriers may facilitate positive actions toward addressing the needs of these mothers and to alleviate the stress on mothers of disabled children. A concerted effort to coordinate services across all disciplines is required to dismantle these barriers by improving the provision of health care delivery and evaluation of welfare policies and services.
Disability in a child not only affects the child but also presents socioeconomic and psychological impacts to the child's family. This study aims to describe the service needs of caregivers of children with disabilities in the state of Penang, Malaysia, and to determine the child and family characteristics predisposing to having more caregiver needs. A cross-sectional survey was conducted between February and June 2013 among caregivers of children aged 0–12 years with disabilities registered with the Penang Department of Social Welfare. Caregivers completed a self-administered mailed questionnaire containing a 20-item Caregiver Needs Scale (CNS). Each item in the CNS was rated on a 5-point Likert scale ranging from ‘help not at all needed’ to ‘help extremely needed’. A total of 273 surveys were available for analysis (response rate 34.0%). The CNS contained four domains. The ‘Help getting Information and Services for child’ domain had the highest mean score (3.61, 95% CI: 3.46, 3.77) followed by ‘Help with Finances’ (3.29, 95% CI: 3.13, 3.45) and ‘Help Coping with child’ (3.11, 95% CI: 2.97, 3.25), while the ‘Help getting Childcare’ domain had the lowest mean score (2.30, 95% CI: 2.13, 2.47). Multivariate regression analysis identified caregivers of younger children and with more severe disability as having more caregiver needs in all domains. Besides that, caregivers of children with learning disability needed more help getting information and help with coping. Caregivers of children with learning and multiple disabilities needed more help getting childcare compared to children with other disability. Caregivers of Indian ethnicity, who had less than a tertiary education and who themselves had medical problems needed more help with finances. The findings on caregiver needs in this study can help inform planning of family support services for children with disabilities in Penang, Malaysia.
Planning and evaluation of health care services for children with disabilities requires information on their caregivers' needs.
This paper aims to present the development and psychometric properties of the Caregiver Needs Scale (CNS), a scale assessing the needs of caregivers of children with disabilities aged 0-12 years in Malaysia.
Development of the scale went through a multistage process of literature review, modification of an existing instrument, input from experts and feedback from service users. Literature review identified content domains and response options. An exploratory factor analysis (EFA) was undertaken to identify subscales of caregiver needs. The internal consistency reliability, convergent validity and discriminant validity of the new scale were examined.
273 caregivers of children with disabilities completed the fielded questionnaire. EFA revealed 4 subscales of caregiver needs: need for 'Help getting information and services for the child,' 'Help coping with the child,' 'Help getting child care' and 'Help with finances.' Three items with factor loading <0.4 were dropped. Cronbach's alpha coefficients of the subscales ranged from 0.813 to 0.903. Total CNS score correlated with number of child's needs and unmet needs. The score was also higher in families with financial and employment problems.
A new instrument was developed to assess the needs of caregivers of children with disabilities for use in the Malaysian population. The CNS showed satisfactory psychometric properties but further examination is warranted to confirm its validity.
Copyright © 2015 Elsevier Inc. All rights reserved.
Parents of children with a developmental disability completed a survey that sampled self-reported needs (information, support, giving explanations to others, community services, finances, and family functioning) in relation to situational variables, such as age (child and parents), type of educational service received by the child, number of siblings, marital status of parents, family income, parents' level of education, and the family's participation in support services. Families of younger children were found to have the greatest overall needs. Increased number of hours per week of employment by fathers was associated with reduced needs. There also was less reported need by families who had a child enrolled in a residential-care setting. These findings extend the assessment of family needs to a population and age of children not addressed in previous research. Recommendations for the types of professional services that should be offered to families on the basis of an assessment of need are presented and discussed.
Objective: To examine qualitatively the experiences of parents participating In Parent to Parent programs. Method: Twenty-four parents of children with special needs, a subset of subjects in a larger quantitative study, participated in a semi-structured telephone interview to explore the Impact and meaning of being matched with a trained supporting parent.
Results: Qualitative analysis reveals a successful match is contingent upon creation of a “reliable ally” in the supporting parent, comprised of four main components: (1) perceived sameness, (2) situational comparisons that enable arning and growth, (3) round-the-clock availability of support, and (4) mutuality of support.
Conclusions: Parent to Parent support creates a community of similar others trained to listen and be supportive and provides an opportunity for matched parents to experience equality and mutuality in their relationship. Findings also identify the need for quality control In Parent to Parent programs and the importance of such programs as an adjunct to traditional professional services.
The dual purpose of this study was to identify areas of need as perceived by parents of children with cerebral palsy in three domains and to evaluate internal reliability of the Family Needs Assessment Tool (FNAT).
The FNAT was distributed to parents and includes a demographic survey and three subscales: service, information, and obstacles to care.
Parents identified services as their greatest need, followed by information and then obstacles to care.
The FNAT may be utilized to evaluate parental perceptions of needs, and provide clinicians with information for program planning and assessing needs central to providing quality care.
We interviewed 200 Latino parents (50 Mexican couples, 50 Puerto Rican couples) living in the United States to determine needs and supports related to raising a child with a disability and to identify variables related to reported needs and supports. The pattern of needs expressed was similar to that found in previous studies, but the number was substantially higher. More support was reported from family and formal sources than from friends or informal sources. Using repeated measures of analysis of covariance involving six family variables and three child variables, we found that English language proficiency was the only variable to account for significant variance in needs and supports.
Objective: To determine parents' service needs at the start of therapeutic toddler class treatment, to analyse determinants and to investigate received help after a period of 10 months.
Subjects: Parents with motor or multiply disabled children in therapeutic toddler classes.
Setting: Sixteen out of 17 Dutch rehabilitation centres.
Design: A sample of 84 parents, stratified according to toddler class size.
Main outcome measures: A questionnaire of 33 items, divided into five categories, was designed to assess parents' needs and to evaluate the amount of received help. Several measures were used to assess child, parent and family characteristics.
Results: Based on factor analysis, five need subscales were distinguished which only partially corresponded to the initial categories. The initial category concerning needs for help in family functioning did not come out as a factor. Needs expressed most frequently belonged to the three subscales of needs for information concerning the child. The average level of needs generally did not differ for mothers and fathers across the subscales. However, we found large variation in needs for both mothers and fathers on each subscale. The most important, positively correlated determinant of parents' needs was social isolation of the family. After 10 months a considerable level of unmet needs was found.
Conclusions: A systematic and periodic assessment of individual needs of parents as well as the services offered is recommended. Professionals of the therapeutic toddler classes should especially focus on providing parents with information on their child's disability and therapy, community services and parenting.
Chinese mothers’ experiences of parenting a child with Down syndrome were explored through semistructured interviews with 18 key informants selected by purposive sampling. Seven major themes were identified: unexpected birth of an abnormal child, acceptance of the child, special needs of the child, worry about the future, knowledge deficit, effect on the marital relationship, and social restrictions. The types of stressors changed over time according to the child’s age, and coping strategies varied accordingly. Strategies frequently used were avoidance, self-reliance, and seeking social support. The particular problems faced by mothers of children with Down syndrome in Hong Kong were discussed in view of the sociocultural background of the region and the highly competitive nature of its society.
To examine unmet needs among families of children with chronic health conditions treated in primary care settings and to identify predictors of these needs.
Primary care physicians referred 83 caregivers of children with chronic health conditions. Mothers completed the Family Needs Survey, as well as other measures of child and family functioning.
Mothers reported a high prevalence and broad range of unmet family needs. The most frequent area of need was for information about services and ways to promote child health and development. Predictors of total number of family needs included demographic characteristics, ratings of social support, and appraisals of family burden. Predictors of specific types of family needs varied according to category of need.
Innovative psychosocial intervention programs are needed in primary care settings to reduce family needs and promote child health. More intensive family supports may be indicated for those with minority-group or low socioeconomic status, limited social support, or high perceived burden.
This article identifies unmet needs and challenges of 37 families caring for children with special health care needs (CSHCN). Data were collected in focus groups. Data saturation occurred in the third group. Another group was conducted to ensure adequate inclusion of rural participants. Mean age of participants was 36 years. Most participants were women (92%), Caucasian (65%), high school graduates (89%), and employed, with 38% from rural communities. All families had health care insurance, primarily Medicaid (87%). An interdisciplinary team used NVIVO software to facilitate content analysis. Seven areas emerged: family support systems, early intervention/school systems, coordination of care, lack of knowledge, provider/family relationships, parent roles, and insurance systems. Caregivers noted the critical role of nurses but a lack of nurse presence in community care systems. This study adds to the multidimensional nature of caring for CSHCN and highlights the importance of considering how families interface with multiple community sectors.
This study investigated the relationship between parental perceptions of coping strategies and family strengths in families of young children with disabilities. The 69 participants completed the Ways of Coping Questionnaire and the Family Hardiness Index. Results indicated that the use of social supports was highly associated with family strengths. In contrast, wishful thinking, self-blame, distancing, and self-control were negatively related to family strengths. Implications for practice are discussed.
A 35-item parent survey was developed to assess the functional needs of parents with young handicapped children. A rationale for scale development and content is presented. Data from 34 two-parent families with handicapped infants suggest that the instrument is a useful source of intervention goals. Several items emerged as high priority needs for mothers and fathers. Addition of an open-ended response format provided a considerable amount of useful information. A readministration of the measure 6 months later with a subset of 20 families yielded high correlations. Implications of these findings for clinicians working with families of young handicapped children are discussed.
The present review summarises literature on the needs of disabled children and their families and draws on research identifying promising service provision. The review took 1997 as its starting point to build on two thorough reviews that were written prior to that time. The findings of the current review largely echo earlier work in terms of what is known about the needs of disabled children and their families, but trends in service provision have altered somewhat, primarily through the use of inclusive services and short-break care. Evaluations of services remain over-dependent on user opinion studies, but studies that use basic evaluation or propose theory-based principles for developing effective services are identified.
Parenting children with developmental disability requires specialized caring skills and knowledge. The aim of this study is to explore the experiences of Chinese parents in caring for these children. The focus group research approach was adopted. Twenty-three parents of children hospitalized with developmental disability from a Maternal and Children Hospital, Guangzhou, China participated in four focus group interviews. Validity of interpretation was ascertained. Inter-coder reliability was established with inter-coder agreement at 0.77. Data were fully transcribed, coded and analysed by content analysis. Eventually, five categories of needs were identified: parental, informational, attitude towards the child, coping and support. Parents needed to be equipped with practical parenting skills and information on developmental disability, and they needed to have realistic expectations for the child. They also needed professional support to cope with caring tasks and activities. Education is recommended as a fundamental strategy to enhance parents’ caring competency.
Data about health and educational services were collected from 187 families with young children (under two years) who have
chronic illnesses and disabilities. The purpose was to assess parents' satisfaction with services their families received
and to identify families' unmet service needs as well as the reasons for these unmet needs. Although families' ratings of
the adequacy of services are relatively high, 28% of the families report unmet service needs. The unmet needs most often reported
are occupational, physical, or speech therapy; respite care/child care; and special education. Lack of funding is the most
commonly given reason for unmet needs. Children with multiple impairments are at highest risk for unmet needs. Only 22% of
unmet needs reported at the initial interview have been met by the time of the six-month follow-up. Increased coordination
and monitoring of services across service sectors are indicated.
Nurses who work in partnership with parents in pediatric settings are encouraged to base nursing intervention decisions on mutually defined priorities and goals. In this study, 38 parents and 13 nurses affiliated with 10 ambulatory programs in one children's hospital were surveyed using modified versions of the Bailey and Simeonsson (1988a) Family Needs Survey to compare their assessments of parental needs. Although nurses and parents identified many of the same needs related to information, support, and community services, there were some differences particularly in prioritization. Only nurses identified needs related to family functioning. Parents generally scored items lower than their nurses did and expressed fewer actual needs for themselves, suggesting that nurses may concentrate more on parents' deficits than on their strengths. Strengthening parents in their roles of primary care givers occurs when nurses, in collaboration with parents, accurately assess parental needs and negotiate appropriate interventions.
There are an estimated 5.9 million children with severe disabilities in the USA, and most of them are cared for at home by their parents and families. Indirect evidence suggests that poor caregiver health may contribute to recurrent hospitalizations and out-of-home placements for children with chronic conditions and disabilities. Greater knowledge of caregiver health-related needs would allow for the improvement of existing services and the development of new strategies to sustain caregivers in their vital roles. This study explores caregiver perspectives of the health implications of long-term informal caregiving for children with disabilities.
Forty parents/caregivers of children with disabilities residing in urban, suburban and rural regions of Utah completed questionnaires and participated in focus groups that explored their feelings regarding their current physical and emotional health and the factors that they viewed as either impairing or promoting their health. The sessions were audiotaped and transcribed. Summary statistics were generated for the questionnaire responses. Focus group content was analysed according to emerging themes and patterns in clusters of information.
The caregiving experience was captured by five themes: (i) stress of caregiving; (ii) negative impact on caregiver health; (iii) sharing the burden; (iv) worry about the future; and (v) caregiver coping strategies. Forty-one per cent of the caregivers reported that their health had worsened over the past year, and attributed these changes to a lack of time, a lack of control and decreased psychosocial energy.
Caregivers of children with disabilities describe negative physical, emotional and functional health consequences of long-term, informal caregiving. They have important insights regarding those aspects of caregiving that have positive and negative influences on their health. Interventions that address these issues may have the potential to positively impact caregiver health.
The majority of children affected by disability are cared for at home by their parents. It is well documented in research literature that the parents are in need of professional support. In the striving to improve the professional caring, it is also important to deepen our understanding about the meaning of informal support from the perspective of parents' life world. The aim of this study was to illuminate the meanings of lived experience of informal support, when being a parent of a child affected by disability. Thirteen parents, eight mothers and five fathers within eight families, participated in narrative interviews, which were analysed by using a phenomenological-hermeneutic method. The meanings resulted in three themes: 'being gratified by experiences of the child as having a natural place in relation with others', 'being provided a room for sorrow and joy' and 'being enabled to live an eased and spontaneous daily life'. These themes emanated from the experiences of other persons' being and doing in relation to the parents, the child affected by disability and the siblings. According to our interpretation, informal support means a life enriching togetherness, the core of which is natural human caring. The findings also showed that parents highly valued professional support concerning informal supporters.
Parenting: a life span perspective. Parenting children with special needs
- C A Martin
- K K Colbert
Martin CA, Colbert KK. Parenting: a life span
perspective. Parenting children with special
needs (pp. 257-281). The McGraw-Hill
Companies: Columbus, 1997.
Service needs of families of children with severe physical disability
- P Sloper
- S Tuner
Sloper P, Tuner S. Service needs of families of
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