Home care needs of children with neuromuscular diseases and the difficulties their families face (original) (raw)
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Revista Brasileira Em Promocao Da Saude, 2012
Necessidades de cuidados domiciliares de crianças com doenças neuromusculares e as dificuldades que suas famílias enfrentam ABSTRACT Objective: To identify home care needs of children with neuromuscular diseases and the difficulties their families face, in Turkey. Method: A descriptive study with a research sample composed of 103 families of children with neuromuscular diseases. The questionnaire form was developed by the researcher and used to collect data, including questions about physical and psycho-social problems; home care needs of children and the family burden at home care. Data was collected within 8 months. For analyzing the data, percentage distributions and Chi-square (Pearson, Fisher) tests were used. Results: Among the children, 17.5% were unable to use lower extremities and 68.9% were unable to use lower and upper limbs; 48 (46.6%) used wheelchairs and/or orthesis; 68% did not practice physical exercise; 18.4% of them were receiving respiration therapy. Almost all of the children had some depressive symptoms. Among the relatives, 87.6% had depressive symptoms, 85.4% presented physical problems and 70.8% referred social isolation. Half of them had problems with their spouses and other children; 51.5% of the participants did not have any emotional support source. Conclusion: In Turkey, there is not an effective home care system, rehabilitation and polyclinic services which include emotional and social support. However, findings of this study demonstrate the needs of families and children for such services and how they are important for increasing their quality of life.
Development and evaluation of the Family Needs Questionnaire for Pediatric Rehabilitation
2023
Purpose: To develop the Family Needs Questionnaire-Pediatric Rehabilitation (FNQ-PR) version and evaluate the reliability and concurrent validity of this self-report measure for caregivers of children with disabilities who receive pediatric rehabilitation services. Materials/Methods: The 39-item FNQ-PR was developed through a modified Delphi Technique. For test-retest evaluation, parents completed the FNQ-PR twice through an online REDCap survey, 1-3 weeks apart. Concurrent validity data (parent-report Impact on Family Scale [IFS-15] and Measure of Processes of Care [MPOC-20]) were collected at baseline. Reliability analyses included ICCs (95%CI) and internal consistency evaluation. Results: Twenty-five caregivers of children ages 2-18 years (mean age 12.2 years) with a disability completed the FNQ-PR at baseline, and 21 completed the retest. FNQ-PR total score demonstrated excellent test-retest reliability (ICC = 0.84); internal consistency was high. The FNQ-PR total score was strongly negatively associated with IFS-15 total score (r = À0.62) and showed fair to strong association with MPOC subscale scores (0.45 r 0.70). Participants did not identify issues with the online format or FNQ-PR item rating. Conclusions: The FNQ-PR demonstrated excellent overall reliability and strong evidence of validity. It fills a gap in clinical care of families of children with disabilities, providing a systematic way for families to identify the extent to which their needs are perceived to have been met. Clinicians can use this tool to target unmet needs that are most important to families. FNQ-PR use in future research will support exploration of the impact of specific child and family factors on family needs.
Unmet Health Care Needs and Impact on Families With Children With Disabilities in Germany
Ambulatory Pediatrics, 2003
Objectives.-We sought to determine the independent effect of unmet health needs on family burden, in addition to the effects of functional impairment and parental care load, in children and adolescents with disabilities. Methods.-We conducted a cross-sectional survey of 273 families with children with disabilities using ambulatory services at an academic children's hospital in Germany. We measured family burden using a translated version of the Impact on Family Scale (FABEL). Independent variables were unmet health needs in 4 areas (medical care, care coordination, health education, and psychosocial services), level of functional disability, and nursing care load at home. Control variables included the child's age and gender, maternal employment status, and parental educational attainment. Results.-Most children had complex health conditions such as brain injury, congenital malformations, metabolic disease, myopathies, and brain tumors. Nearly half of families (44.6%) received home nursing cash benefits, indicating high care load. Parents reported most unmet needs in the areas of psychosocial counseling (17.2%) and care coordination (8.1%). After controlling for sociodemographic factors, unmet health needs predicted family burden independently of type (mental retardation or mobility impairment) and number of disabilities and nursing care load. Although only a few parents reported lack of medical services, this factor also contributed significantly to family burden. Multivariate analysis with these variables explained 45% of the variance in impact on the family. Conclusions.-Addressing unmet health needs may alleviate the impact of caring for a child with a disability. Further studies are needed to show more definitively that families can benefit from integrated services including psychosocial counseling.
Current Status of Supporting Children and Families Needing Home Health Care；
2020
Despite the fact that advances in Japanese medical technology have saved lives in childbirth, the number of children requiring medical care due to some sort of disorder or disease continues to increase every year. Because children, unlike adults are still growing and developing, educational support and community support are required in addition to medical and nursing care. This study set out to analyze the role and function of coordinators by reviewing papers concerning support for children and families who need at-home medical care in Japan, so as to clarify the current situation and challenges pertaining to them. In terms of research design, the literature review made use of Igaku Chuo Zasshi (ICHUSHI-Web), Medical Online, and CiNii Articles. The keywords used were "medical care," "children," "at-home," "coordinator," and "community" (in Japanese). This resulted in the identification of 189 papers. Of those, 18 papers conforming to the objectives of this study were selected as targets for analysis. The following four groups were generated with regard to support for children in need of medical care: Support for parents and children as well as co-resident family members, Support for integrated healthcare networks, Educational support, and Support for challenges entailed by continuing to live at home. Focusing not only on mothers and children, but also on all coresident family members provides a deeper understanding of at-home treatments and leads to smoother transition to at-home care. Also, cross-institutional and crossdisciplinary cooperation and collaboration with healthcare and welfare providers, communities, and government agencies is essential for continuing to provide support for children who require medical care at the society and community level. Care manager with the specialty of the child is necessary. Moreover, an educational approach can help families become aware of children's developmental challenges and foster an awareness of roles within the family unit.
Reliability and Validity of The Family Needs Scale In A Turkish Population
Rehabilitation Nursing, 2013
This study aimed to adapt an English version of the survey tool Family Needs Scale (FNS) for Turkish patients and to evaluate its psychometric properties. Background: Social care providers can reduce the risk for dysfunction in low-income families of preschoolers and increase resilience by responding to needs identified by the families themselves. Quality instruments developed to identify family needs within this population are scarce. To measure the needs of families with disabled children effectively, valid and reliable instruments that are sensitive to parents' expectations and to the constructs of nursing must be used. Conclusions: Nine factors were detected in the results, Cronbach's a reliability coefficient was .95 and item-total point correlations were between .32-.81. In addition, it was found that the test-retest correlation value was .91, which was found to be statistically significant (p < .001). Relevance to clinical practice: This scale can be used in nursing research projects to evaluate family needs regarding the care of children with a disability.
Unmet service needs of families of young children with chronic illnesses and disabilities
Journal of Family and Economic Issues, 1995
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 w,.; to assess par,.ats' 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.
Characterization of Home Care Services and care for children with special health care needs
Revista da Escola de Enfermagem da USP
Objective: To characterize Home Care Services in the state of Santa Catarina, Brazil, and to know the care demands of children with special health care needs. Method: Descriptive, exploratory study with a quantitative approach. Data collection carried out through a questionnaire, via Google Forms, with professionals from seven Home Care Services, from April to July 2020. Data were organized in the software Excel and analyzed through descriptive statistics with frequency and percentage distribution. Results: Of the seven services participating in the study, in 85.7% the nurse is the teams’ coordinator. Opening hours in most services are during the day, on weekdays and weekends, and all of them receive referrals from Primary Health Care teams. Regarding care demands, all children need psychomotor and social rehabilitation, 72.2% use oxygen therapy, 66.6% gastrostomy, 55.5% tracheostomy, and 50% mechanical ventilation. Conclusion: Home care presents complexities due to chronic conditio...
Family Quality of Life: A Qualitative Inquiry
Mental Retardation, 2003
In this qualitative inquiry we investigated the conceptualization of family quality of life. Focus groups and individual interviews were conducted with 187 individuals: family members (e.g., parents, siblings) of children with a disability, individuals with a disability, family of children without a disability, service providers, and administrators. Data were collected in urban and rural settings to elicit the participants' understanding of family quality of life. Ten domains of family quality of life were identified and described in terms of subdomains, indicators, and key points raised by participants. Implications are discussed in terms of future directions for research and family support. MENTAL RETARDATION VOLUME 41, NUMBER 5: 313-328 | OCTOBER 2003 Family quality of life outcomes Poston et al.
2020
Blake, and Doctor Annette Dickinson for their reliability, encouragement and guidance throughout my PhD journey. Their incredible hard work and feedback have been invaluable, and I could not have completed this journey without them. Thanks to Dr Catherine Wilkinson for examining my registration viva voce and Dr Andrew Moore for examining my progression viva voce. Their interest in my study and feedback for the next phase of my PhD was beneficial to the development of this study. Thanks also to Professor Helen Langton and Professor Sally Spencer for agreeing to examine my final viva voce. I owe my gratitude to Annette Ramsden for her support with my initial literature search and retrieval, and to John Haycock for his support with the Inspiration mind mapping programme. I would like to thank my son, Steven, for his outstanding IT training, support and patience. Special thanks to Andy Kirkcaldy for his unconditional support and understanding during our shared PhD journeys and in my previous Research Assistant role. Also, to my Edge Hill University PhD studentship peers and friends, Julie, Keegan, Holly, Lynn, Gergana and Danielle. My husband, Andrew, and three children, Kim, Kirstie, and Steven, wider family, and friends must be recognised for all their years of love and because they have undoubtedly felt somewhat neglected over the last (almost) four years (despite my best efforts for them not to) but have not forgotten or given up on me. Lastly, I would like to express my heartfelt gratitude to the children and young people and their sisters, mothers, fathers and grandmother who, willingly and without reward, gave up their precious time to take part in this study, which would not have happened without them. It was my privilege to gain an insight into your lives and this gave me the tenacity to complete this PhD study and the strength to live in the moment and make the most of every day. Thank you so much. v Dedication I dedicate this thesis to all children and young people with complex health care needs and their family members. Parents, I admire your strength and determination to ensure that your child receives the best care even though you are often physically and emotionally exhausted. I hope that the dissemination of findings from this study can positively inform the future planning, development and delivery of appropriate and effective technology and services. I hope that such technology and services are what you want, need and value, and they enhance your experiences of living at home with medical technology, and the health, wellbeing, quantity and quality of life of all your family members. vi Glossary of Terms Augmentative and Alternative Communication Device (with Brain-Computer Interface): Although not commonly considered as 'medical technology', augmentative and alternative communication (AAC) and other equipment such as brain-computer interface (BCI) enable children (or adults) to command devices, such as wheelchairs, using only eye gaze or brain signals. Child: Although the legal definition of a child in the United Kingdom is a child who has not yet reached their 18 th birthday, within this thesis, the term child will be used to describe a child, young person or adult who requires medical technology and is aged up to 25 years old. This is because children who have a disability can be provided with services to safeguard and promote their welfare under the Children Act 1989 until they are aged 25 years. Complex Health Care Needs: The term complex health care needs generally indicates that a child has an irreversible life-limiting or life-threatening condition and is expected to die prematurely. They may also have a severe disability and special educational needs. Family: The concept of family can be broad. Family, in the context of this study is the parent(s) and child/ren (related by blood ties or adopted) living together as a unit. Home: Home, in the context of this study, is the physical domestic building where a child lives with their family and includes places such as the garden or garage. Life-limiting conditions: The term life-limiting condition is used to describe diseases that cannot be cured and from which a child will die prematurely. Some of these conditions cause progressive deterioration rendering the child increasingly dependent on their parents and carers. Life-threatening conditions: Life-threatening conditions are those for which curative treatment may be feasible but can fail. Children in long-term remission or following successful curative treatment are not included in this definition. Palliative Care: An active and total approach to care from the point of diagnosis or recognition through to death and beyond. Palliative care focuses on enhancement of quality of life for the child/young person and support for the family. It includes symptom management, the provision of short breaks and care through death and bereavement. vii Technology-dependent: Although there is also no agreed definition for the term technologydependence in the United Kingdom, within this thesis, technology-dependence refers to medical technology and equipment which is used to monitor and treat a child's medical condition(s), to maintain their health status, prevent further disability or to sustain their life.