Time use of parents raising children with severe or profound intellectual and multiple disabilities

Luijkx, Jorien; Putten, Annette van der; Vlaskamp, Carla

doi:10.1111/cch.12446

Cited by 70 publications

(51 citation statements)

References 24 publications

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“…This last negative impact corresponds with a study by Dobson and Middleton (1998), who found that the costs of raising a child with severe disabilities are three times as high as those of raising a typically developing child. Parents' negative appraisal of the extraordinary demands on their time corresponds with previous research showing that parents spend significantly more time on care tasks compared to parents raising typically developing children (Luijkx et al, 2017). Their free time, on the other hand, was substantially limited compared to parents raising typically developing children.…”

Section: Discussionsupporting

confidence: 74%

“…Positive appraisals may be important in helping parents continue their care tasks over a long period (Folkman & Moskowitz, 2000), especially in parents of children with PIMD. Their substantial negative appraisal of the impact on family life combined with the extreme time burden (Luijkx et al, 2017) calls for support tailored to the needs and wishes of families with children with PIMD and to promote optimal family quality of life.…”

Section: Discussionmentioning

confidence: 99%

“…A recent study into families with a child with PIMD showed that mothers and fathers both spend an amount of time on caretaking tasks which far exceeds the usual time parents spend on typically developing children (Luijkx, Van der Putten, & Vlaskamp, 2017), which corresponds with previous research (Mencap, 2001;Tadema & Vlaskamp, 2010). Although the more objective consequences of raising children with PIMD (in terms of time and care tasks) have been studied, Tadema and Vlaskamp (2010) also show that this does not necessarily reflect the subjective impact on the family life of parents.…”

mentioning

confidence: 99%

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A valuable burden? The impact of children with profound intellectual and multiple disabilities on family life

Luijkx

Putten

Vlaskamp

2017

Journal of Intellectual & Developmental Disability

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Background: This study analysed parents' positive and negative appraisals of the impact of raising children with profound intellectual and multiple disabilities (PIMD) on family life. Method: Mothers (n = 52) and fathers (n = 27) of 56 children with PIMD completed a questionnaire focused on their positive and negative appraisals of the impact of childhood disability on family life. Scale means (ranging from 10 to 40) were calculated, as was the relationship between the two subscales. Results: Mothers and fathers indicated that their children affect family life both positively (M = 31.4 and 32.8, respectively) and negatively (M = 31.3 and 28.5, respectively). Only fathers showed a positive significant relationship between the positive and negative subscales. Conclusions: Parents' positive and negative appraisals co-occur. Although parents positively appraise the impact on family life, their substantial negative appraisals demand tailored support for families raising children with PIMD with a strong focus on practical support.

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Section: Discussionsupporting

confidence: 74%

Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

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A valuable burden? The impact of children with profound intellectual and multiple disabilities on family life

Luijkx

Putten

Vlaskamp

2017

Journal of Intellectual & Developmental Disability

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“…Despite being supported by human and technical assistance, the burden on families is likely to be considerable. Some studies have explored burden on informal caregivers who have children with multiple disabilities7–9 and in informal caregivers who have children with cerebral palsy 10–14. The caregivers reported deteriorated health status, financial difficulties, restriction in their social participation and physical overload.…”

Section: Introductionmentioning

confidence: 99%

Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study

Rousseau¹,

Baumstarck²,

Valkov³

et al. 2020

BMJ Open

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Objectives Polyhandicap (PLH), defined by a combination of profound intellectual impairment and serious motor deficits, is a severe condition with complex disabilities. In France, care of the large majority of PLH individuals is managed in specialised rehabilitation centres or residential facilities, but some of PLH individuals are cared for at home. The aims of this study were to assess the self-perceived burden among informal caregivers of PLH individuals and to identify potential determinants of this burden. Design Cross-sectional study (Neuropaediatric Department, Trousseau Hospital, Paris, France). settings PLH children were recruited from a specialised paediatric/neurological department. Participants The selection criteria of caregivers were age above 18 years and being the PLH individual's next of kin. Outcomes measures From March 2015 to December 2016, data were collected from the caregivers, including sociodemographical data, health status, psychobehavioural data (quality of life, mood disorders and coping) and self-perceived burden. In addition, the health status of the PLH individual was collected. Relationships between the burden scores and potential determinants were tested (correlations coefficients, Mann-Whitney tests, generalised estimating equations models). results Eighty-four children were eligible; 77 families returned their questionnaire. The informal caregivers of PLH children experienced a high level of perceived burden (scores ranged from 55±20 to 81±12). Eighty per cent of them had more than 5 hours of daily caregiving and 51% of them had to get up more than twice during the night. The main factors associated with caregiver burden were age, financial issues, health status, daily care and coping strategies. The patients' health status was not associated with caregiver burden. Conclusions Some of the caregiver burden determinants might be modifiable. These findings should help healthcare workers and health-decision makers implement specific and appropriate interventions. trial registration number NCT02400528.bACkgrOunD Polyhandicap (PLH) is a severe health condition with complex disabilities. This chronic disorder occurs in an immature brain,

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“…The combination of the significant motor and cognitive limitations provides the child as well as the parent with specific challenges, because of the dynamic influences between these and other developmental domains (Fagnart, ; McCollum, ) as well as additional practical and emotional barriers. For example, parents need to invest a lot of time in physical care tasks and support activities for their child with multiple and complex needs and may still be in the acceptance process, potentially disrupting the otherwise natural and spontaneous course of everyday activity (Brett, ; Luijkx, van der Putten, & Vlaskamp, ; Tadema & Vlaskamp, ). Also, there is a great need for people in the child's proximal environment to act as “scene‐setters,” that is to arrange opportunities for child participation (Axelsson, Imms, & Wilder, ).…”

Section: Introductionmentioning

confidence: 99%

Exploring family activities and child engagement: A study on children with a significant cognitive and motor developmental delay

keer

Leeuwen

Maes

2019

Research Intellect Disabil

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Background: Everyday activities are an important setting for stimulating child functioning, but are understudied in young children with a significant cognitive and motor developmental delay. Therefore, we aim to characterize their family activities in terms of diversity, frequency, child engagement and family member's presence, compared to typically developing children.Methods: By asking a parent to fill out an adapted version of the Child Participation in Family Activities questionnaire, the activity pattern of 49 children within the study group and 45 children within the control group were assessed and compared.Results: Children in the study group generally experience less diverse activities (with an additional lower frequency of out-of-home activities) and show lower engagement levels compared to typically developing children. Conclusions:Incorporating high levels of personal interaction, highly stimulating activities and adapted leisure activities into the daily activity pattern of children with multiple disabilities might be a pathway to increased engagement levels. K E Y W O R D Schild engagement, family activities, profound and multiple disabilities, severe and multiple disabilities 780 |

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Time use of parents raising children with severe or profound intellectual and multiple disabilities

Cited by 70 publications

References 24 publications

A valuable burden? The impact of children with profound intellectual and multiple disabilities on family life

A valuable burden? The impact of children with profound intellectual and multiple disabilities on family life

Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study

Exploring family activities and child engagement: A study on children with a significant cognitive and motor developmental delay

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