Mothering children who have disabilities: a Bourdieusian interpretation of maternal practices

McKeever, Patricia; Miller, Karen‐Lee

doi:10.1016/j.socscimed.2003.12.023

Cited by 156 publications

(142 citation statements)

References 40 publications

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“…64,[195][196][197] It is also well established that services are often fragmented, that intra-agency service planning is poor and that professionals, as well as families, are confused about provision. 195,197,198 The obstacles to accessing services (see Figure 3) were in evidence, as in other studies, and parents had to 'fight for everything', 199 and relationships with providers are described as 'repeatedly asymmetrical, non-collaborative, and negative': [199][200][201][202] I've had to fight . .…”

Section: Environmental Factorsmentioning

confidence: 75%

“…113,196,203 By way of illustration, two parents, each with two DMD boys, responded differently to the expectations that they would deliver LBT exercises, which are causing each of them back pain: The often endemic stress experienced by mothers of disabled children (see Chapter 1, Significance in terms of ill health) is frequently related to inadequate, unco-ordinated and hard-to-access services. 195,197,200 As social networks have often shrunk, 196 close family becomes the main support. [204][205][206] Grandparents, who Parent R01/005…”

Section: Environmental Factorsmentioning

confidence: 99%

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Aquatic therapy for children with Duchenne muscular dystrophy: a pilot feasibility randomised controlled trial and mixed-methods process evaluation

Hind

Parkin

Whitworth

et al. 2017

Health Technol Assess

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BackgroundDuchenne muscular dystrophy (DMD) is a rare disease that causes the progressive loss of motor abilities such as walking. Standard treatment includes physiotherapy. No trial has evaluated whether or not adding aquatic therapy (AT) to land-based therapy (LBT) exercises helps to keep muscles strong and children independent.ObjectivesTo assess the feasibility of recruiting boys with DMD to a randomised trial evaluating AT (primary objective) and to collect data from them; to assess how, and how well, the intervention and trial procedures work.DesignParallel-group, single-blind, randomised pilot trial with nested qualitative research.SettingSix paediatric neuromuscular units.ParticipantsChildren with DMD aged 7–16 years, established on corticosteroids, with a North Star Ambulatory Assessment (NSAA) score of 8–34 and able to complete a 10-m walk without aids/assistance. Exclusions: > 20% variation between baseline screens 4 weeks apart and contraindications.InterventionsParticipants were allocated on a 1 : 1 ratio to (1) optimised, manualised LBT (prescribed by specialist neuromuscular physiotherapists) or (2) the same plus manualised AT (30 minutes, twice weekly for 6 months: active assisted and/or passive stretching regime; simulated or real functional activities; submaximal exercise). Semistructured interviews with participants, parents (n = 8) and professionals (n = 8) were analysed using Framework analysis. An independent rater reviewed patient records to determine the extent to which treatment was optimised. A cost-impact analysis was performed. Quantitative and qualitative data were mixed using a triangulation exercise.Main outcome measuresFeasibility of recruiting 40 participants in 6 months, participant and therapist views on the acceptability of the intervention and research protocols, clinical outcomes including NSAA, independent assessment of treatment optimisation and intervention costs.ResultsOver 6 months, 348 children were screened – most lived too far from centres or were enrolled in other trials. Twelve (30% of target) were randomised to AT (n = 8) or control (n = 4). People in the AT (n = 8) and control (n = 2: attrition because of parental report) arms contributed outcome data. The mean change in NSAA score at 6 months was –5.5 [standard deviation (SD) 7.8] for LBT and –2.8 (SD 4.1) in the AT arm. One boy suffered pain and fatigue after AT, which resolved the same day. Physiotherapists and parents valued AT and believed that it should be delivered in community settings. The independent rater considered AT optimised for three out of eight children, with other children given programmes that were too extensive and insufficiently focused. The estimated NHS costs of 6-month service were between £1970 and £2734 per patient.LimitationsThe focus on delivery in hospitals limits generalisability.ConclusionsNeither a full-scale frequentist randomised controlled trial (RCT) recruiting in the UK alone nor a twice-weekly open-ended AT course delivered at tertiary centres is feasible. Further intervention development research is needed to identify how community-based pools can be accessed, and how families can link with each other and community physiotherapists to access tailored AT programmes guided by highly specialised physiotherapists. Bayesian RCTs may be feasible; otherwise, time series designs are recommended.Trial registrationCurrent Controlled Trials ISRCTN41002956.FundingThis project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full inHealth Technology Assessment; Vol. 21, No. 27. See the NIHR Journals Library website for further project information.

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Section: Environmental Factorsmentioning

confidence: 75%

Section: Environmental Factorsmentioning

confidence: 99%

Aquatic therapy for children with Duchenne muscular dystrophy: a pilot feasibility randomised controlled trial and mixed-methods process evaluation

Hind

Parkin

Whitworth

et al. 2017

Health Technol Assess

View full text Add to dashboard Cite

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“…They often feel they must avoid backstage murmurings as they come in for meetings, be perceived as helpful and engaged but not as "a squeaky wheel." These experiences contribute to parental stress (Blum, 2012;Deatrick, Knafl, & Walsh, 1988;Innocenti, Huh, & Boyce, 1992;McKeever & Miller, 2004;Smith, Oliver, & Innocenti, 2001). If we begin to accept parents as members of the team with a voice to be heard we must become aware of our own power as therapists and professionals.…”

Section: From Playing the "Right" Part To Having A Voicementioning

confidence: 99%

A Case Review: Reframing School-Based Practices Using a Critical Perspective

Phelan¹,

Ng²

2014

Physical & Occupational Therapy In Pediatrics

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It is well established in the literature that school-based practice is fraught with challenges such as acquisition of appropriate and sufficient resources, communication barriers among professionals, parental burden, and redundancies and gaps in services. The purpose of this perspective paper is to reframe potentially problematic school-based practices using a critical social science perspective, suggesting a vision and strategies for therapists working in school-based practice contexts. We illustrate our approach with a case example. To reframe school-based practices, we begin with Jill's case, exploring it through a critical lens to identify potential issues and opportunities for change. We then trace these findings to our larger dataset from an ongoing program of research, to ensure relevance to the broader context of school-based practice. Reframing of three school-based practice issues are discussed, from: a) advocacy by proxy to collaborative dialogue, b) governing texts to guiding texts, and c) playing the "right" part to having a voice. Although this is a perspective paper based on a case exemplar, we posit how we may reframe and rethink schoolbased practices in pediatric rehabilitation. We suggest that only with a genuine shift in our professional values will we see the enactment of collaborative practice in school-based settings.

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“…Indeed, the caregiving role of mothers of children with chronic conditions may be even more pronounced given the tremendous challenges involved. Qualitative studies indicate that these mothers may experience unequal distributions of caregiving responsibilities with other family members, disruptions to family and work life, having to manage numerous daily tasks, and inadequate home care and other resources for their children [32,33]. However, scant research has investigated the association between maternal characteristics and the emotional and behavioural functioning of children and youth with chronic conditions [34,35].…”

Section: Introductionmentioning

confidence: 99%

Maternal factors and the emotional and behavioural functioning of adolescents with chronic health conditions

Etherington

McDougall

DeWit

et al. 2015

Disability and Rehabilitation

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Purpose: This study investigated the association between mothers' mental health and education and the emotional and behavioural functioning of adolescents with chronic health conditions over time. Methods: Data were drawn from an ongoing study. Study participants (N ¼ 363) were recruited through eight children's rehabilitation centres. Logistic regression models were estimated. Results: There were significantly reduced odds that girls would display clinical signs of hyperactivity/inattention one year later compared to boys when a maternal mental health condition was present (OR ¼ 0.10; p50.01). Where low maternal education was present, girls were more likely to display peer relationship problems one year later (OR ¼ 3.72; p50.01). For both genders, having a mother with less than a high school education was also associated with conduct problems one year later (OR ¼ 2.89; p50.01). Conclusions: Findings support a link between maternal factors and emotional and behavioural functioning in adolescents with chronic conditions. A holistic and family-centred approach to assessment and service delivery is indicated. ä IMPLICATIONS FOR REHABILITATIONWhen conducting clinical assessments, service providers should consider associations between maternal education and mental health and the emotional and behavioural functioning of adolescents with chronic health conditions. A holistic and family-centred approach to assessment and service delivery is indicated to ensure adolescents with chronic conditions and their families receive support for interrelated needs. ARTICLE HISTORY

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Mothering children who have disabilities: a Bourdieusian interpretation of maternal practices

Cited by 156 publications

References 40 publications

Aquatic therapy for children with Duchenne muscular dystrophy: a pilot feasibility randomised controlled trial and mixed-methods process evaluation

Aquatic therapy for children with Duchenne muscular dystrophy: a pilot feasibility randomised controlled trial and mixed-methods process evaluation

A Case Review: Reframing School-Based Practices Using a Critical Perspective

Maternal factors and the emotional and behavioural functioning of adolescents with chronic health conditions

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