Background: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon “parenting a child with PIMD.” Method: We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research. Findings: The essential meaning of the phenomenon was understood as “continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time.” The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns. Conclusions: Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents’ challenges offers them the possibility to participate in society. Healthcare professionals should address the parents’ perspectives related to the child’s quality of life.
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The aim of this study was to gain insight into the visual functioning of children with profound intellectuual and multiple disabilities (PIMD). A mixed methods study was performed, determining cross-sectional quantitative ophthalmological/orthoptic data, and qualitative observational data with a standardized research protocol (SRP) of 73 children with PIMD. Descriptive statistics and correlations were used for analyses of the data. Using ophthalmological data, 90.4% of the participants were found visually impaired. Based on the visual acuity (VA) testing, 49.6% of the participants had an impaired VA (
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In the Netherlands, many parents of children with profound intellectual and multiple disabilities care for their children at home. Little is known about how parents and involved healthcare professionals share and align medical care for these children. This study aims to contribute to a better understanding of the dimensions that affect how medical care is shared and how healthcare professionals can align care with family needs. The study design was inspired by grounded theory. We analyzed in-depth interviews with 25 Dutch parents. The analysis identified five dimensions affecting how parents and professionals shared and aligned medical care: fragility, planned care, irregularities, interactions with providers, and parents’ choices. We recognized three distinctive ways these dimensions interplayed, characterizing scenarios of sharing care: dependent care, dialogical care, and autonomous care. The findings illuminated that parental distress decreased when parents could communicate about what they considered important for their child and family and its implications for sharing care. Parents developed their capacity to manage medical care and often evolved in their thinking about the quality of care and life. Sometimes this evolution was due to struggles with the care provided by professionals. Therefore, healthcare professionals may need to broaden the relational work of shared decision-making to include the sharing of medical care. Arrangements need to be continually reassessed as changes in the child’s and family’s situation trigger changes in preferred patterns of sharing care. Commitment to parents’ autonomy implies that healthcare professionals should be attentive to the parents’ emotional and relational needs.
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Background: It is thought that physical health conditions start at a young age in people with profound intellectual and multiple disabilities (PIMD). Knowledge regarding the prevalence, associations and development of these physical health conditions could be used for purposes of prevention as well as appropriate care and support but is currently lacking. Objective: The aim of this study is to gain insight into the prevalence of physical health conditions and associations between these conditions in young children with PIMD. Methods: The study used cross-sectional data related to the physical health conditions of children with PIMD (n = 51, aged between 12 and 61 months). Data were collected in Belgium and in the Netherlands through a checklist filled in by primary caregiver(s). Physical health conditions were classified into categories by the 10th revision of the International Classification of Diseases and Related Health Problems (ICD-10) system. The number of physical health conditions and associations between them were analysed. The analysis focused on prevalence rates and associations represented by odds ratios (p < 0.05). A graphical model was estimated to represent dependencies and conditional dependencies between physical health conditions. Results: We found a mean of 3.8 (range 1–8, SD 1.9) physical health conditions per child. Most of the physical health conditions were found in the ICD-10 chapter ‘Nervous System’, with hypotonia as the most frequent at 70.6%. Five significant large associations were found between spasticity–contractures (OR 9.54); circulatory system–contractures (OR 7.50); scoliosis–contractures (OR 10.25); hearing impairments–skin problems (OR 58.20) and obstipation–hypotonia (OR 19.98). Conclusion: This study shows that at a young age, multiple physical health conditions are present in children with PIMD. In addition, we found five associations between physical health conditions.
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Background Parenting a child with profound intellectual and multiple disabilities has great implications. Parents generally rely heavily on healthcare and social welfare services in caring for the child at home. Previous studies indicated mismatch between what parents need to preserve family and personal wellbeing and what is typically provided by services. This study focused on the role of healthcare and social welfare services in childcare and aims to contribute to understanding how parents perceive their interactions with service providers. Methods We interviewed 25 Dutch parents who cared for their child at home. Data were analysed using Framework Method. Findings Two overarching themes were found: “Being the lifeline” addressed that parents had central roles in fragmented services, and “Losing ownership” highlighted that parents were constrained in living life according to own beliefs and values while interacting with providers. Conclusions Findings illuminated that many parents became overburdened and compromised heavily on agency over family thriving due to functioning of healthcare and social welfare services. Findings supported working with integrated family case managers, creating effective and proactive access to equipment and services, and enacting high quality facilities for help with childcare and respite. These are important conditions to enable parents to construct family life more autonomously and make their further contribution to society. This may also lead to improved connotations of dependence on healthcare and social welfare services.
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BACKGROUND: People with severe or profound intellectual and motor disabilities (SPIMD) experience numerous serious physical health problems and comorbidities. Knowledge regarding the prevalence of these problems is needed in order to detect and treat them at an early stage. Data concerning these problems in individuals with SPIMD are limited. Therefore, the aim of this study was to determine the prevalence of reported physical health problems in adults with SPIMD through a review of medical records and care plans.METHOD: We conducted a cross-sectional study employing data obtained from medical and support records. A sample of adults with SPIMD was recruited in eight residential care settings. Physical health problems that had occurred during the previous 12 months or were chronic were recorded.RESULTS: The records of 99 participants were included. A wide range of physical health problems were found with a mean of 12 problems per person. Very high prevalence rates (>50%) were found for constipation, visual impairment, epilepsy, spasticity, deformations, incontinence and reflux.CONCLUSIONS: The results suggest that people with SPIMD simultaneously experience numerous, serious physical health problems. The reliance on reported problems may cause an underestimation of the prevalence of health problems with less visible signs and symptoms such as osteoporosis and thyroid dysfunction.
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It is estimated that visual and severe or profound intellectual disabilities affect 10,000 to 15,000 adults in the Netherlands, which is approximately 0.05-0.08% of the Dutch population. These adults have an intelligence quotient of less than 35 points, and their visual acuity is less than 6/18. Comorbidity is very common in these adults, i.e., they often experience other physical impairments, sensory impairments, or medical problems.People with severe or profound intellectual disabilities and visual impairment (MDVI) encounter numerous physical health problems simultaneously. In addition, they have lower physical activity and physical fitness levels compared to the general population. As a consequence, their ability to perform activities of daily living is decreased. Last but not least, persons with MDVI appear to be at risk of decreased participation. Royal Dutch Visio and the Hanze University closely collaborate with the Research Centre on Profound Intellectual and Multiple Disability of the Rijksuniversiteit Groningen to perform research in persons with MDVI. In this symposium, their research and that of international research groups will be presented concerning the following topics: participation, physical health problems, optometric issues, motor activation, and measuring muscle strength of persons
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• Introduction research concern • Presentation: Images and metaphors expressed by Dutch parents (caring for children with PIMD) • Dialogue and participation
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Background: Adverse Childhood Experiences (ACEs) are an overlooked risk factor for behavioural, mental and physical health disparities in children with intellectual disabilities (ID) and borderline intellectual functioning (BIF). Aims: To gain insight into the presence of the 10 original Wave II ACEs and family context risk variables in a convenience sample of children with ID and BIF in Dutch residential care. Methods and procedures: 134 case-files of children with ID (n = 82) and BIF (n = 52) were analysed quantitatively. Outcomes and results: 81.7 % of the children with ID experienced at least 1 ACE, as did 92.3 % of the children with BIF. The average number of ACEs in children with ID was 2.02 (range 0???? 8) and in children with BIF 2.88 (range 0???? 7). About 20 % of the children with moderate and mild ID experienced 4 ACEs or more. Many of their families faced multiple and complex problems (ID: 69.5 %; BIF 86.5 %). Multiple regression analysis indicated an association between family context risk variables and the number of ACEs in children. Conclusions and implications: The prevalence of ACEs in children with ID and BIF appears to be considerably high. ACEs awareness in clinical practice is vital to help mitigate negative outcomes.
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The ageing of people with intellectual disabilities, with associated morbidity like dementia, calls for new types of care. Person-centered methods may support care staff in providing this, an example being Dementia Care Mapping (DCM). DCM has been shown to be feasible in ID-care. We examined the experiences of ID-professionals in using DCM. We performed a mixed-methods study, using quantitative data from care staff (N = 136) and qualitative data (focus-groups, individual interviews) from care staff, group home managers and DCM-in-intellectual disabilities mappers (N = 53). ageing, dementia, Dementia Care Mapping, intellectual disability, mixed-methods, personcentred care
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