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“It’s not a simple answer.” A qualitative studyto explore how healthcare providers can bestsupport families with a child with autism spectrumdisorder and overweight or obesity

MCPHERSON, Amy C
PEREZ, Arnaldo
BUCHHOLZ, Annick
FORHAN, Mary
BALL, Geoff D C
January 2021

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Purpose: This qualitative study aimed to explore the experiences of parents supporting their child with Autism Spectrum Disorder (ASD) and overweight or obesity (OW/OB), including their weight management support needs.

 

Methods: Interview transcripts were analysed using inductive thematic analysis. Nine parents (n = 9 mothers) of ten children with ASD (7 males, 3 females) participated in individual semi-structured interviews.

 

Results: The three themes developed were: (1) Our journey to obtain weight management support; (2) I need real-world solutions; and (3) The what, who and how of our weight management needs. Parents reported being proactive in seeking weight management support for their child but were disappointed with the services offered. Resources were not tailored to the child’s complex nutrition and behavioural issues or their abilities and functioning. A multidisciplinary approach that integrated both disability and weight management expertise was desired, but not experienced. A range of formal and informal programs were recommended.

 

Conclusion: This study provides a call to action for supports that ensure children with ASD and OW/OB receive integrated, individualised support to maximise their health and wellness.

Enhancing Function, Fun and Participation with Assistive Devices, Adaptive Positioning, and Augmented Mobility for Young Children with Infantile-Onset Spinal Muscular Atrophy: A Scoping Review and Illustrative Case Report

LIVINGSTONE, Roslyn
PALEG, Ginny
2021

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Recent advances in medical interventions have changed the prognosis for children with infantile-onset spinal muscular atrophy (SMA-1); however, little has been published regarding rehabilitation management. A rapid scoping review was conducted in November 2020 using Medline and CINAHL databases. Evidence supporting use of assistive devices and equipment to enhance participation, mobility, function, and posture in lying, sitting, and standing positions was sought. From 239 articles, only five studies (describing use of augmentative communication, manual and power mobility, supported standing and orthotic devices) met inclusion criteria. Results are presented alongside a case report of a 5-year-old boy (treated with Nusinersen since 7 months-of-age) who uses a variety of devices to enhance his activity and participation in family life. While reclined and tilted sitting positions as well as power mobility were previously considered for children with SMA-1, this child has progressed to supported upright standing, self-propelling a lightweight manual wheelchair indoors, communicating using multiple methods and taking steps in a dynamic mobility device. Power mobility was introduced in a switch-adapted cart at 11 months and he was independently exploring indoors and outside in his power wheelchair before 20 months. Research evidence is limited, but alongside the case report highlights the importance of a comprehensive and proactive approach to enhancing function, fun and participation with family and friends through adaptive equipment for children with significant and life-limiting disabilities.

Managing to learn bimanual activities – experiences from children and adolescents with cerebral palsy – a qualitative analysis

LIDMAN, Git
HIMMELMAN, Kate
PENY-DAHLSTRAND, Marie
May 2020

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Purpose: Children and adolescents with cerebral palsy often have impaired hand function. This makes it difficult for them to deal with everyday activities. The aim of the study was to explore the experiences of children and adolescents with unilateral spastic cerebral palsy when it comes to learning and dealing with activities requiring bimanual use.

 

Method: Ten participants, attending mainstream schools, with unilateral spastic cerebral palsy (10–18 years, MACS-level I-III) took part in semi-structured interviews. Qualitative analysis with verbatim transcripts were analysed using a Grounded Theory approach.

 

Results: The learning of bimanual activities was described as a process taking place in interaction with the dynamics of everyday situations. Five categories describing the participants experiences emerged: “Reaching a point where you want to learn”, “Awareness and acceptance of your own abilities”, “Dealing with the boundaries of the disability”, “Dealing with the impact of people around you” and “Strategies for learning”. A multi-dimensional theory was derived, summarising how the participants learned bimanual activities in daily life.

 

Conclusions: Children and adolescents with unilateral spastic cerebral palsy express that the process of learning bimanual activities can only take place when it fits in with life as it unfolds. Thus, they have to adapt to a changing context and their own developing skills.

Capability of deaf children with a cochlear implant

RIJKE, Wouter J
VERMEULEN, Anneke M
WENDRICK, Karine
MYLANUS, Emmanuel
LANGEREIS, Margreet C
VAN DER WILT, Gert Jan
November 2019

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Introduction: The main idea underlying this paper is that impairments such as deafness are particularly relevant to the extent that they lead to deprivation of capability. Likewise, the impact of healthcare services such as cochlear implants and subsequent rehabilitation can best be inferred from the extent that they protect or restore capability of those affected.

 

Methods: To explore children’s post-implant capabilities, we tested two newly developed digital, adaptive child self-report and parent-report questionnaires in 19 deaf children (aged 8–12 years) and their parents during rehabilitation, as well as in 23 age peers with normal hearing.

 

Results: Despite the impressive speech-language results that were recorded with cochlear implants, the post-implant capabilities of the deaf children we evaluated differed from those of their hearing peers, with the cochlear implant group appearing particularly disadvantaged in areas such as accessing information, communication, social participation, and participation in school.

 

Conclusion: Deaf children with cochlear implants who are performing well on linguistic and auditory tests can still experience serious limitations in desired functioning. Our findings suggest that a capability approach may reveal aspects of what is being achieved through rehabilitation that might otherwise remain unnoticed, and that could help to further improve the well-being of our patients.

Views of children with cerebral palsy and their parents on the effectiveness and acceptability of intensive speech therapy

PENNINGTON, Lindsay
RAUCH, Rosie
SMITH, Johanna
BRITTAIN, Katie
March 2019

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Purpose: To understand children and parents’ views of the effectiveness and acceptability of intensive dysarthria therapy.

 

Materials and Methods: Twenty-two children with cerebral palsy and dysarthria joined a pilot RCT comparing intensive therapy and usual care. Children (n = 11) allocated to dysarthria therapy comprising three 40-minute sessions per week for six weeks and their parents (n = 11) were interviewed two weeks before and six weeks after therapy. Interviews were transcribed verbatim and analysed thematically.

 

Results: Analysis revealed five themes: Motivations, My new voice; The new me; I can do more; Success rooted in therapy design. Children had received little therapy for speech and were keen to improve intelligibility. Overall, therapy was viewed as effective. Participants described changes in children’s speech production, which they associated with increased speech intelligibility. Children were described as more confident following the therapy, to have more successful conversations, with a wider range of partners in more environments, thereby increasing their social participation. The programme was viewed as acceptable, despite its intensity, due to the short term commitment and wider benefits for the child. Parents valued the organised structure and individualisation of the programme and inclusion in the therapy process.

 

Conclusion: Families found the intervention acceptable and effective. A definitive trial of its clinical effectiveness is warranted.

Features of integrated professional training for physically disabled people in a community-based rehabilitation programme in the rural and urban areas of Congo

LUTALA, MP
MASIKA, VP
KASEREKA, MC
KASAGILA, EK
2014

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Background: The rehabilitation of physically disabled people has been explored from the perspectives of patients, health professionals, rehabilitation agencies, etc. However, no study has linked disability types, training programmes and career prospects. In this study, we therefore evaluated the professional integration of trained disabled people.

 

Methods: This retrospective survey included all physically disabled people admitted to two rehabilitation centres in Congo between 1996 and 2005. Data collection used registers from two units, the medical unit and the rehabilitation unit, to obtain information on age, sex, disability type, follow-up training, present living activity and field of training. We defined ‘professional integration’ as being when the current profession matched the training received at the rehabilitation centre.

 

Results: The percentage of participants with integrated training was 96.8% (95% CI; 92.1–98.7%). In the urban setting, 6.7% (95% CI; 2.6–16.1%) of the trainees were not integrated, while all were integrated in the rural setting. Trainees aged between 16 and 25 years and those 51+ years represented 12.5% (95% CI; 4.9–28%) and 50% (95% CI; 25.3–74.6%) of the non-integrated cases respectively. Paralysis from poliomyelitis was the most common [62.9% (95% CI; 54.3–70.8%)] disability, and the non-integrated participants included people with poliomyelitis [1.2% (95% CI; 0.2–6.7%)], general paralysis [10.5% (95% CI; 2.9–31.3%)] and sight disorders [50% (95% CI; 9.4–90.5%)]. Tailoring was the main field of training [57.4% (95% CI; 48.7–65.7%)], and high numbers of participants with non-integrated training worked in tailoring, shoe making, welding and computer repair.

 

Conclusions: Despite a high rate of integration in Congo, professional training and subsequent integration would still benefit from a comprehensive approach that considers the type of disability, training and socio-demographic features. Further studies targeting alumni from the training programmes and their ongoing assessment are warranted.

The HELP guide for community based rehabilitation workers : a training manual

LOVEDAY, Marion
2006

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This is a training manual for community based rehabilitation workers based upon physiotherapist's work on a rehabilitation project in Cape Town, South Africa. The manual is aimed at trainers of rehabilitation workers who are assumed to have adequate medical knowledge. The manual is divided into the following 4 main topics: health in the community; normal body functions; conditions and treatment; management of patients. Each section contains a summary of the learning aims for the rehabilitation workers, and the teaching is based mainly on a question and answer format
Note: originally published in 1990 by SACLA Health Project

Sierra Leone and civil war : neglected trauma and forgotten children

HEEREN, Nicolas
2004

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This article describes the work of Handicap International in working with children and young people in Sierra Leone. It emphasises how the particular nature of different forms of torture created links between the children’s physical trauma and the psychological suffering. This article is useful for practitioners who are working with children and young people who have been the victims and perpetrators of violence
Humanitaire, No 9

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