Profound Intellectual And Multiple Disabilities Research Articles

Parents’ tacit knowledge of their child with profound intellectual and multiple disabilities: A qualitative study

ABSTRACT Background Parents’ tacit knowledge plays an important role in the care of persons with profound intellectual and multiple disabilities (PIMD). As little is known about its nature and use, we aimed to explore this parental tacit knowledge. Method We conducted semi-structured interviews with parents (n = 11) about their tacit knowledge of their child, based upon video recordings they made of their child’s behaviour, and analysed the data thematically. Results Parents described their tacit knowledge as the capacity to read their child’s subtle signs, or to sense and “just know” their child’s situation. They had developed this knowledge because of their shared history of proximity and interaction and emphasised that it was crucial in ensuring their children’s needs are met. Conclusions We describe how parents’ tacit knowledge contributes to “good care” for persons with PIMD, interpret the implications for (medical) care practice, and discuss ways to deal with its limitations.

Family Resilience Affecting Well-Being of Families With a Child With Profound Intellectual and Multiple Disabilities.

Persons with profound intellectual and multiple disabilities (PIMD) have pervasive support needs, which are often managed by their families. By being resilient and positively adapting to this challenge, families may maintain a positive family quality of life (FQOL). We therefore aimed to understand how families with a child with PIMD experience their family resilience, and if and how it affects their FQOL. Participants were 64 parents of a person with PIMD from 44 families. Total family resilience, as well as most subscales received positive scores, and also had a significant positive effect on FQOL. These results provide more insight into the family dynamics of families with a child with PIMD, which should inform policies, and provided services for these families.

Physical health conditions in young children with profound intellectual and multiple disabilities: The prevalence and associations between these conditions.

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. 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. 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. 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). 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.

Health care management adequacy among French persons with severe profound intellectual and multiple disabilities: a longitudinal study

BackgroundThe care organization of persons with profound intellectual and multiple disabilities (PIMD) varies by country according to the health care system. This study used a large sample of French individuals with severe PIMD/polyhandicap to assess: 1) the adequacy of care setting over a 5-year period and 2) health care consumption.MethodsThe longitudinal study used data from the French EVALuation PoLyHandicap (EVAL-PLH) cohort of persons with severe PIMD/polyhandicap who were receiving managed in specialized care centres and residential facilities. Two assessments were performed: wave 1 (T1) in 2015–2016 and wave 2 (T2) in 2020–2021. The inclusion criteria were as follows: age > 3 years at the time of inclusion; age at onset of cerebral lesion younger than 3 years old; and severe PIMD. The adequacy of the care setting was based on the following: i) objective indicators, i.e., adequacy for age and adequacy for health status severity; ii) subjective indicators, i.e., self-perception of the referring physician about medical care adequacy and educational care adequacy. Health care consumption was assessed based on medical and paramedical care.ResultsAmong the 492 persons assessed at the 2 times, 50% of individuals at T1 and 46% of individuals at T2 were in an inadequate care setting based on age and severity. Regarding global subjective inadequacy, the combination of medical adequacy and educational adequacy, 7% of individuals at T1 and 13% of individuals at T2 were in an inadequate care setting. At T2, a majority of individuals were undermonitored by medical care providers (general practitioners, physical medicine rehabilitation physicians, neurologists, orthopaedists, etc.). Important gaps were found between performed and prescribed sessions of various paramedical care (physiotherapy, occupational therapy, psychomotor therapy, etc.).ConclusionsThis study revealed key elements of inadequate care management for persons with severe PIMD/polyhandicap in France. Based on these important findings, healthcare workers, familial caregivers, patients experts, and health decision-makers should develop appropriate care organizations to optimize the global care management of these individuals.Trial registrationNCT02400528, registered 27/03/2015.

Multilevel and general linear modeling of weather and time effects on the emotional and behavioral states of children with profound intellectual and multiple disabilities.

Eliciting the emotional and behavioral states of children with severe or profound intellectual disabilities (IDs) and profound intellectual and multiple disabilities (PIMD) due to their complex and atypical developmental trajectories has become increasingly elusive. It is evident that the environment, influenced by weather conditions and time of the day, plays a pivotal role in molding children's behaviors, emotions, and interactions. This underscores the significance of the environment as a critical factor in exploring the communication dynamics of children with PIMD/IDs. Over five months during fall and winter seasons, we conducted 105 video-recorded sessions with 20 children aged 8 to 16 with PIMD/IDs. These sessions aimed to capture the emotional and behavioral states interpreted by caregivers while simultaneously collecting indoor and outdoor weather indices, location, and time data. Using cross-classified multilevel and general linear models adjusted for individual characteristics and location variability with subsequent simple slope analyses, we examined the main and seasonal interaction effects of indoor and outdoor weather indices and time of the day on the emotional and behavioral states of children with PIMD/IDs. The models revealed that higher atmospheric pressure (atm), indicative of pleasant and favorable weather conditions, was associated with increased engagement (indoor: p < 0.01; outdoor: p < 0.01) and interest (outdoor: p < 0.01) behaviors. In contrast, engagement levels decreased before lunchtime (p < 0.01; p < 0.001), and inclement or unstable weather conditions characterized by low-pressure systems (p < 0.05) and stronger wind speed (p < 0.05) led to more refusal or disagreement. During winter, children displayed significantly more agreement with their caregivers (p < 0.001). Interestingly, they also engaged more on cloudy days (p < 0.05). Furthermore, simple slope analyses revealed that high atm conditions in fall were linked to more engagement (p < 0.05) while humid conditions predicted more assent behaviors (p < 0.001). However, cloudy weather predicted less attentional focusing (p < 0.05) and interest (p < 0.01) behaviors in winter. This study confirms that fluctuations in weather indices, including seasonal changes and time of the day, can provide potential pathway indicators and supplement behavioral observations to elicit the behavioral states of children with PIMD/IDs. These findings highlight the importance of considering these factors when designing meaningful interactions and communication interventions for this population.

The influence of contextual factors on an intervention for people with disabilities from support persons' and health personnel's perspectives: a focus group study.

Contextual factors influence interventions in healthcare and pose a particular challenge in interventions designed for people with profound intellectual and multiple disabilities (PIMD). Exploring support persons' and health personnel's experience of an intervention may improve our understanding of the influence of contextual factors. Such exploration is important for revealing areas and focus points for future implementations. Therefore, the aim of this study is to explore support persons' and health personnel's experience of contextual factors during involvement in an intervention for people with PIMD. This focus group study includes eight groups, comprising a total of 34 support persons and health personnel, at habilitation centres at four regions in central Sweden. Data were analysed inductively using a content analysis approach. Three themes emerged from the analysis of the informants' perspectives on the contextual factors: (1) structure and support enhances intervention feasibility; (2) an intervention's benefit for people with PIMD increases its acceptability; and (3) being engaged and involved increases support persons' and health personnel's motivation. Our findings show that the implementation of an intervention for people with PIMD should focus on the recipients of the intervention in its context, forming a clear communication plan. A training programme should be provided for the recipients and providers of the intervention. Finally, the implementation process can be facilitated by creating space for staff to contribute and by encouraging participation and ownership for everyone involved. Using a co-design strategy can enable a shared responsibility to solve the identified challenges, while contributing to the development and design of future interventions for people with disabilities.

'What if I'm no longer around?': An evaluative description of a structured group conversation about the care for persons with profound intellectual and multiple disabilities when they outlive their parents.

Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members and care professionals in exploring together how parental roles may be taken over by others when necessary. We conducted a mixed methods study, with a focus on the qualitative data, to describe and evaluate three group conversations. Family members (n = 22) of persons with PIMD who live in residential care facilities and care professionals (n = 9) evaluated the structured group conversation as valuable. While both parties reported that the group conversation (re)sparked their attention for the topic, mostly family members planned to take concrete action as a result of it. The group conversation encourages parents to communicate explicitly about the future care for their child with PIMD, and offers both family members and care professionals support in exploring this future care together.

Sharing meaning across the neurodivide: Research through illustration alongside people with profound intellectual and multiple disabilities (PIMD)

The perspectives of people labelled with profound intellectual and multiple disabilities (PIMD) remain significantly underrepresented in academic research. This article introduces a developing research methodology that explores how illustration-based methods might assist researchers in attuning to, and amplifying, non-linguistic contributions to knowledge made by people who do not use conventional language to communicate. As a medium that champions alternative forms of communication and aims to make complex subjects accessible to a wide range of audiences, illustration offers additional opportunities to open up the research arena to people with PIMD. This potential is discussed here within the framework of the author’s ongoing Ph.D. research. The methodology outlined in this article is developed within the Sensory Studio, a mobile workspace purpose-built for artistic exchange and co-creation between artists with PIMD and Frozen Light Theatre, a Norwich-based organization creating multi-sensory shows specifically for PIMD audiences. Reflecting on the ethical considerations that shaped the design of this methodology, the author shares some of the unanticipated findings that research through illustration has so far brought to light.

Parents' experiences of parenting a child with profound intellectual and multiple disabilities in France: A qualitative study.

Parents of persons with profound intellectual and multiple disabilities (PIMD) play a major and often lifelong role in the care and support of their child. A better understanding of parents' perspectives regarding their experiences of parenting their child with PIMD is essential to support them more effectively. Although this topic has been explored extensively in Anglo-Saxon and Northern European countries, little is known about the experience of these parents in a highly institutionalized context such as that in France. We explored parents' experiences of the activities they performed to care for their child with PIMD (namely, the 'parenting work') in the French context. Qualitative semistructured interviews were conducted by telephone with 34 parents of persons with PIMD aged 8-35. The resulting data were analyzed using thematic analysis. The analysis highlighted the diversity of activities performed by parents as well as the influence of context on the forms of this parenting work. Five themes were developed: (1) navigating the challenges of obtaining medical recognition; (2) negotiating a concealed domain and becoming an expert; (3) unfolding medical and medicosocial care management; (4) navigating the challenges of daily livingand (5) shaping one's child's possibilities. This study offers a better understanding of the challenges, leversand expectations of parents of children with PIMD in France. Contextual factors such as the lack of knowledge of PIMD among health professionals, access to knowledge and know-how associated with care management, the administrative complexity of access to care and equipment, institutional issues (e.g., professional turnover) and societal ableism (e.g., access to infrastructures, interpersonal discrimination) shape the work parents perform to support their child's needs. It is necessary to consider contextual aspects to better support these parents and their children. Suggestions for applications are provided in the discussion. One of the researchers, a parent of a child with PIMD, supported the research design and provided feedback on the study's procedures and manuscript.

Polyhandicap, profound intellectual multiple disabilities : Concept and definition of a highly specific public health issue

ObjectivesThe concept of polyhandicap first emerged in the late ‘60s in France, with actually a consensus on its definition. This consensus has yet to be reached internationally. The absence of an international consensus on a definition and name for persons with polyhandicap limits progress in research and health planning for these people. MethodsThis article describes the history of the emergence of the concept of polyhandicap in France and internationally. ResultsThe emergence of the concept and definition of polyhandicap is part of the history of the development of special education and care for children with disabilities started at the end of the 19th century and during the first half of the 20th century. In France, between 1970 and 2002, working groups composed of professionals and family associations gradually developed and refined the definition of polyhandicap, differentiating it from other clinical entities such as cerebral palsy. Internationally, the term polyhandicap is used in 4 European countries: in France where it first appeared, in Italy, in French-speaking Belgium, and in French-speaking Switzerland but also outside the EU. Various terms may be used around the world to describe clinical entities similar to polyhandicap; the most frequently used in the literature is the term Profound Intellectual and Multiple Disabilities (PIMD) or PIMD Spectrum which does not systematically refer to an early brain injury. DiscussionWe are currently in the process of internationalizing the concept and definition of polyhandicap, and hopefully, as was the case for cerebral palsy in the 2000s, the various research teams working on this subject around the world will create collaborations and research networks targeting this specific population. ConclusionA consensus around a precise definition of polyhandicap is important to ensure that these people are recognized for their uniqueness and specific qualities and to provide them adapted care.

Understanding quality of life of persons with profound intellectual and multiple disabilities

AbstractIn this paper, we discuss the applicability of the consensus document, prepared by the Special Interest Research Group on quality of life (QoL) of the International Association for the Scientific Study of Intellectual Disabilities in August 2000, for persons with Profound Intellectual and Multiple disabilities (PIMD). We compare our findings from previous empirical research with some elements of the themes and principles of the consensus document. We will reflect (1) on the domains of QoL mentioned in the consensus document, and (2) on the assessment by proxies. We recommend reflection on the following aspects when composing a new consensus document, which includes QoL of persons with PIMD: first, reconsider whether all eight domains are useful in care practice for—and research about—persons with PIMD. We assert that the domains of health, well‐being, capability to influence the environment, and also (family) relationships, are particularly relevant for the QoL of persons with PIMD and, second, accept interpretation of signals and signs by proxies in the assessment of QoL in persons with PIMD and do not value this as second best.

Odor hedonic responses in children and young people with profound intellectual and multiple disabilities.

Odors are closely linked to emotions, play an important role in the well-being of individuals and can influence mood. Despite these crucial properties, the hedonic responses to odors of people with profound intellectual and multiple disabilities (PIMD) remain little explored. This within-subjects study aims to examine whether children and young people with PIMD react in a differentiated way to odors evaluated as pleasant or unpleasant by neurotypical adults and, if so, with which behaviors. The influence of their global mood on their emotional responses to odors is also examined. Twenty children and young people (7-18 years old) with PIMD were exposed to four pairs of hedonically contrasted odors. A control stimulus was presented before each odorant. Five emotional responses, one physiological reaction (nausea reactions), and three responses reflecting approach toward or avoidance of the stimulus were recorded throughout the duration of the stimulus exposure. The participants' global mood status was measured before the start of the research with the French version of the Mood, Interest and Pleasure Questionnaire (Ross and Oliver, 2003). The results show that when exposed to pleasant odorants, participants kept their heads aligned with the odorant source longer, smiled longer, and produced more positive vocalizations. In contrast, unpleasant odorants elicit more pouts and grimaces. Nausea reactions occurred in the presence of unpleasant odorants. The hedonic responses were more marked during the second presentation of the stimuli. Participants with a higher MIPQ score showed significantly more emotional reactions to odors. The results confirm the presence of olfactory preferences in participants with PIMD and the existence of a link between their mood, emotions and olfactory hedonic processing. They prompt the use of odors to support not only the cognitive development of this population, but also their mood and their emotional regulation abilities.

Digital participation and digital education for people with profound and multiple disabilities and complex communication needs

“Digitalisation” is the buzzword of many societal as well as social changes. Participation in society is increasingly realized digitally, which is why it is important to be involved in these processes and to participate in the digital world. The UN CRPD also assigns an important role to (digital) technology as a prerequisite for inclusion and participation. Universal design, accessibility, assistive technology, and reasonable accommodation should help to avoid exclusion for people with disabilities. People with profound intellectual and multiple disabilities (PIMD), who often have complex communication needs (CCN) in addition to severe cognitive impairments, have fundamentally limited opportunities for participation. These are also visible in the context of digitalisation. At the same time, digital media also offer specific opportunities, particularly for people with PIMD and CCN. Among other things through the combined use of assistive technologies, digital media can significantly facilitate their daily lives. The present paper examines the significance, requirements and challenges as well as the potentials of digital participation and digital education in the lives of adults with PIMD and CCN and presents considerations for the design of digital education for adults. Finally, a conceptual framework for digital education for people with PIMD is presented.

Olfactive short-term habituation in children and young people with profound intellectual and multiple disabilities

BackgroundDespite its importance for learning, the existence of the habituation process and its characteristics in people with profound intellectual and multiple disabilities (PIMD) remains understudied. Habituation is, however, considered the simplest form of learning, and a significant neuroadaptive mechanism. Even though habituation occurs in all sensory modalities, the olfactory system is where it manifests itself very visibly. AimThis study explores the olfactory short-term habituation abilities of children and young people with PIMD. MethodTwenty children and young people with PIMD (7–18 years) were presented six times successively with a 30-second habituating olfactory stimulus. The interstimulus interval was 15 s. A new odour was presented on the seventh trial. The scenario was carried out two times with two pairs of stimuli. The participants’ head alignment duration on the odour was measured. ResultsSeventeen participants out of 20 manifested a decline in response, which reached about 50 % between the first and sixth presentation of the habituation odour. All habituators also showed a distinctive response when exposed to a novel odour. The participants who did not habituate showed a strong, non-fluctuating response to the stimulus throughout the presentations. Three participants only habituated to one of the two habituation stimuli. Conclusion and implicationsThe results raise theoretical, scientific, and practical issues. They question the factors explaining olfactory habituation mechanisms, namely the stimulus properties and the severity of impairment, reveal the need for points of comparison for interpreting this population’s responses, and point to the consequences of stimuli repetition and or variety in therapeutic or educational settings for these individuals’ learning and cognitive functioning.

Tacit knowledge in dyads of persons with profound intellectual and multiple disabilities and their caregivers: An interpretative literature study.

Caring for persons with profound intellectual and multiple disabilities (PIMD) demands specific expertise. Tacit knowledge seems to play an important role, but little is known about its nature, including what is necessary for its development and transfer. To gain understanding of the nature and development of tacit knowledge between persons with PIMD and their caregivers. We conducted an interpretative synthesis of literature on tacit knowledge in caregiving dyads with persons with PIMD, persons with dementia or infants. Twelve studies were included. Tacit knowledge is about caregivers and care-recipients becoming sensitive and responsive to each other's cues and together crafting care routines. Learning takes place in a constant process of action and response that transforms those involved. Building tacit knowledge together is necessary for persons with PIMD to learn to recognise and express their needs. Suggestions are made for ways to facilitate its development and transfer.

Parent perspectives on the assessment of quality of life of their children with profound intellectual and multiple disabilities in the Netherlands

BackgroundAssessing Quality of Life (QoL) of persons with profound intellectual and multiple disabilities (PIMD) is challenging, yet QoL plays an important role in medical decision-making processes concerning persons with PIMD. The perspectives of parents of children with PIMD on the assessment of their QoL have not been studied. AimTo explore the perspectives of parents on the assessment of QoL of their children. MethodsWe conducted a qualitative study, forming three focus groups with 22 parents of children with PIMD to explore their views on what is necessary to assess QoL of their children and subsequently, who is best suited to assess QoL. ResultsParents describe a long-term relationship of the assessor with family (child and parents), with trust as an important aspect, as a requirement to assess QoL. Parents consider family members, preferably the parents themselves as the best assessors of QoL, followed by siblings. Professional caregivers, mostly mentioned by name, are considered the next alternative. Most parents thought that physicians do not know the child well enough to assess their QoL. ConclusionsIn conclusion, the parents of children with PIMD in our study consider trust and a long-term relationship essential for assessing QoL.

Well-Being of Families with a Child with Profound Intellectual and Multiple Disabilities

In disability research, there is an increased focus on the well-being of families with a child with a disability, also known as family quality of life (FQOL). However, the well-being of families with a child with profound intellectual and multiple disabilities (PIMD) has not yet been explored, even though their well-being may be affected by the pervasive support needs they need to manage. In turn, sufficient well-being of the family is necessary to guarantee adequate support and thus well-being for the person with PIMD. The purpose of this study was to examine the well-being of families with a child with PIMD, including possible differences between parents and siblings, and how individual and familial factors are related to FQOL. A total of 82 participants from 44 families with a child with PIMD in the Netherlands participated. Multilevel models were employed to analyze FQOL scores and which factors significantly affected scores. Families scored moderately high on both total score and subscales, scoring lowest on emotional well-being. There were significant differences between parents and siblings and a significant effect of age of the respondent on emotional well-being, material well-being, and disability-related support. Siblings scored higher than parents, and scores decreased with age on these domains. Although families with a child with PIMD scored, on average, satisfactory on their FQOL, they were least satisfied with the support for their emotional well-being, and may therefore require additional support for this aspect of their family life. Results of this study contribute to understanding the lives of families with a child with PIMD and their support needs.

Siblings' and parents' outlook for the prospective care for a family member with PIMD

AbstractObjectiveThis study aimed to explore the approaches adopted by the parents and typically developing siblings as to the prospective care and support for a family member with profound intellectual and multiple disabilities (PIMD).BackgroundWith an ever‐extending life span of persons with PIMD, it has become necessary for their parents to make arrangements for prospective care in which siblings may play an important role.MethodThe study was carried out by means of semistructured interviews held with parents and siblings of individuals with PIMD. The method used for analysis consisted in open and axial coding. Grounded theory methodology procedures served as the theoretical framework.ResultsParents commonly thought a future caregiving role would be an unfair burden to the typically developing siblings, who, in contrast, welcomed such a commitment.ConclusionsParents should not worry about the prospective care for their offspring with a disability given by their typically developing siblings. However, they should attend to the quality of communication, resolving discrepancies in the family members' perspectives on caregiving in the future.ImplicationsThese findings might offer insight for the parents and siblings of persons with PIMD as well as for social welfare institutions, social workers, and other professionals who work with children and their parents.

The construct validity and reliability of the Motor Development List for the assessment of motor skills in children with profound intellectual and multiple disabilities: The next step?

ABSTRACT Background: There are no psychometrically validated instruments available to measure motor skills of children with profound intellectual and multiple disabilities (PIMD). In this study, the construct validity and reliability (Rho) of the Motor Development List for children with PIMD (MDL-PIMD), a proxy-reported measure, was investigated. Methods: The MDL-PIMD was filled in by parents of 52 children with PIMD every six months over a period of two years. The items of the original MDL were categorised into subscales. A Mokken scale analysis for polytomous items was conducted for five subscales (Posture, Locomotion, Reaching, Grabbing and Facial Actions). Results: Several items were deleted to improve scalability. All scales showed good scalability (range scale H .66-.78) and reliability (range Rho .92-.98). Conclusions: The MDL-PIMD seems to be a valid and reliable instrument for assessing the motor skills of children with PIMD, although more research is needed to confirm the factorial structure.

Reliable assessment of pain behaviour in adults with profound intellectual and multiple disabilities: The development of an instruction protocol

Persons with profound intellectual and multiple disabilities (PIMD) are vulnerable when it comes to experiencing pain. Reliable assessment of pain-related behaviour in these persons is difficult. Aim To determine how pain items can be reliably scored in adults with PIMD. We developed an instruction protocol for the assessment of pain-related behaviour in four phases. We used videos of 57 adults with PIMD during potentially painful situations. The items were assessed for inter-rater reliability (Cohen's kappa or percentage of agreement). The developed instruction protocol appeared to be adequate. Twelve items had satisfactory inter-rater reliability (n= 9: .30-1.00; n= 3: 85%-100%). Calibrating and adjustments to the instructions and item set appeared to be crucial to reliably score 12 items in adults with PIMD. Further research should focus on creating an assessment instrument based on these reliably scored items.