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A high prevalence of manual wheelchair rear-wheel misalignment could be leading to increased risk of repetitive strain injuries

OTT, Joseph
HENDERSON, Travis
WILSON-JENE, Holly
KOONTZ, Alicia
PEARLMAN, Jonathan
2021

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Purpose: To determine the prevalence and severity of manual wheelchair rear wheel misalignment in community-dwelling manual wheelchair users and estimate the associated increases in rolling resistance (RR) and risk of repetitive strain injuries (RSIs).


Materials and Methods: Data were collected in an outpatient rehabilitation clinic, a university research laboratory, and at adaptive sporting events in the United States. Two hundred active, self-propelling man- ual wheelchair users were recruited. Angular misalignment (referred to as toe angle) while the wheelchair was loaded with the user, and the difference between the maximum and minimum toe angle (referred to as slop) with the wheelchair unloaded.

 

Results: Average results for toe angle and slop (movement in the rear wheels) were 0.92 and 0.61 degrees, respectively. Using a lab-based testing method, we quantified the impact of increased RR forces due to misalignment in increased RR forces. Our results indicate that the average toe angle while under load and slop, without loading, measured in the community increase required propulsion force by 3.0 N. Combined toe angle and slop (i.e., the worst-case scenario) added increased propulsion force by 3.9 N. Conclusions: We found that rear-wheel misalignment was prevalent and severe enough that it may increase the risk for RSIs and decrease participation. To mitigate this issue, future work should focus on reducing misalignment through improved maintenance interventions and increased manufacturing qual- ity through more stringent standards.

User Satisfaction with Conventional Lower-Limb Orthotic Devices: a Cross-Sectional Survey in Pakistan

Aftab, Zohaib
Zaidi, Zohaib Ahmed
Shafi, Faraz
2020

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Purpose: Persons with disabilities affecting lower-limb function use ankle- foot-orthoses (AFO) and knee-ankle-foot-orthoses (KAFO) on a regular basis. However, the effectiveness of these devices in daily use is seldom evaluated, especially in the developing world. This study aimed to evaluate user satisfaction with lower-limb orthotic devices while performing a broad spectrum of daily life activities in Pakistan, and to document the desired outcomes.

 

Method: A survey was conducted among orthotic device users in the out-patient departments of three hospitals in Lahore, Pakistan. The survey questionnaire was devised by adapting the Prosthetic Evaluation Questionnaire to suit orthotics evaluation. Fifty-four AFO and KAFO users participated in the study.

 

Results: Most users felt comfortable while walking on even surfaces with their orthoses. However, donning/doffing these, climbing stairs and performing certain routine activities were considered problematic for most people. Energy conservation was the most desired AFO feature, while the KAFO users wanted automatic knee-joint function.

 

Conclusion and Implications: Overall satisfaction with the existing lower- limb orthoses is adequate. Yet, significant improvements are needed in terms of energy efficiency and comfort while walking on different terrains. Further research is required in order to improve the functioning of the existing orthotic devices.

Physical Activity of the Community- Dwelling Elderly Population in Gujarat, India: A Cross-Sectional Study

Patel, Samira Sirajulhak
Gupta, Nalina
Parmar, Lata
2020

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Purpose: While ageing is an inevitable phenomenon of life, physical activity is important for healthy ageing. Compared to the other age groups, older adults throughout the world have the lowest rate of participation in recommended levels of physical activity. This study aimed to investigate the physical activity status of the community-dwelling elderly population in Gujarat, India.

 

Method: This was a cross-sectional study. A door-to-door survey was conducted among selected communities near Vadodara in Gujarat. Based on the inclusion criteria (age≥60years, MMSE-≥24), 347 elderly persons were included in the study. Data was collected using the Global Physical Activity Questionnaire (GPAQ), and analysed using descriptive statistics.

 

Results: Among the 347 older adults (mean age 67.43±7.46 years) who participated in the study, 159 were male and 188 were female. While 125 participants (36%) were physically active at levels recommended by the World Health Organisation, 222(64%) were physically inactive.

 

Conclusion: Only 36% of the participants were physically active as per WHO recommendations. The men were more physically active than the women in the study sample. This study implies that there is a need to create an awareness regarding the importance of physical activity for healthy aging.

Effects of Biofeedback and Task-Oriented Intervention on Balance Confidence and its Relationship with Social Participation among Stroke Survivors

Pachiappan, Elumalai
2020

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Purpose: The study aimed to compare the effects of balance training on balance confidence and its relationship with social participation among clients with stroke.

 

Method: A pre- and post- experimental group design was used. Stroke survivors who met the inclusion criteria were consecutively assigned to two groups (task- oriented and biofeedback). Participants in the task-oriented group received task- oriented activities for 20 minutes and the biofeedback group received intervention in correckta (equipment used for balance training) for 20 minutes, along with conventional occupational therapy - 5 sessions per week, for 12 weeks. Balance Confidence Scale was used for measuring balance confidence, and Frenchay Activities Index (FAI) was used to measure social participation. Statistical calculations were performed with SPSS version 16.0 package. Statistical tests were carried out with the level of significance set at p≤ 0.05.

 

Results: The findings suggest that both the biofeedback and task-oriented groups showed significant improvement in balance confidence and there was no statistically significant difference between the groups. There was a moderate to good relationship between balance confidence and social participation.

 

Conclusions and Implications: There is evidence that many stroke survivors have low balance confidence. Therapists should assess the balance confidence of their clients and encourage them to participate in these beneficial interventions.

Expanding the evidence on community-based rehabilitation for people with amputation: Longitudinal analysis of three cohorts in Guatemala

NABER, Jonathan
November 2020

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The aim of this study was to expand the evidence base regarding the effectiveness of CBR services on improving the multifaceted mobility of people with amputation in Guatemala. This aim was accomplished through two specific objectives:

 

1. Compare the longitudinal changes in the multifaceted mobility of participants in three consecutive cohorts of the ROMP CBR Program in Guatemala.

2. Share new practices for providing CBR to people with amputation, developed in the second and third cohorts of the program.

Measuring treatment outcome in children with developmental coordination disorder; responsiveness of six outcome measures

HEUS, Inge
WEEZENBERG, Daphne
SEVERIJEN, Sebastiaam
VLIELAND, Thea Vliet
VAN DER HOLST, Menno
July 2020

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Purpose: Although measuring outcome of rehabilitation in children with Developmental Coordination Disorder is considered important no consensus exists on which instruments to use. An important attribute of a measurement instrument would be that it is sensitive to clinical changes. The aim of this prospective, observational study was therefore to investigate the responsiveness of six potentially suitable instruments.

 

Methods: Forty-one children (34 boys, median age 7.8 years, Inter Quartile Range: 7.2–9.2) receiving multidisciplinary rehabilitation treatment for Developmental Coordination Disorder were included (mean treatment time: 32.8 h, Standard Deviation 7.3). The following instruments were applied before and after rehabilitation: Movement-Assessment-Battery-Children-2 (MABC-2), Canadian Occupational Performance Measure (COPM), Systematic detection writing problems (SOS-2-NL), DCD-daily, Behaviour Rating Inventory of Executive Function (BRIEF), and TNO-AZL children’s Quality of Life questionnaire (TACQOL)). Change-scores (paired t-test/Wilcoxon-test) and responsiveness (Effect-sizes and Standardized-Response-Means) were calculated.

 

Results: Significant differences over time were found for the Canadian Occupational Performance Measure, DCDdaily and Movement-Asessment-Battery-Children-2 (p < 0.05). The responsiveness of these instruments was moderate-high (Canadian Occupational Performance Measure-performance Effect-Size:1.70/Standardized-Response-Mean:1.81, Canadian Occupational Performance Measure-satisfaction Effect-Size:1.65/Standardized-Response-Mean 1.53; DCDdaily-total-score Effect-Size:0.40/Standardized-Response-Mean:0.62, DCDdaily-Quality-score Effect-Size:0.74/Standardized-Response-Mean:0.89, DCDdaily-time-score Effect-Size:0.21/Standardized-Response-Mean:0.43; MABC-2-total-score Effect-Size:0.42/Standardized-Response-Mean:0.43, MABC-2-Ball-skills-score Effect-Size:0.33/Standardized-Response-Mean:0.36). Systematic detection of writing problems (SOS-2-NL), Behaviour Rating Inventory of Executive Function (BRIEF) and TNO-AZL children’s Quality of Life questionnaire (TACQOL) were not responsive to change.

 

Conclusion: Although the Movement-Assessment-Battery-Children-2 test is the most widely used instrument when measuring rehabilitation outcome in Developmental Coordination Disorder, the Canadian Occupational Performance Measure and DCDdaily seem to be more responsive and constitute a valuable addition.

Association of anxiety and depression with physical and sensory functional difficulties in adults in five population-based surveys in low and middle-income countries

WALLACE, Sarah
MACTAGGART, Islay
MORGON BANKS, Lena
POLACK, Sarah
KUPER, Hannah
June 2020

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The aim of this study was to assess the association between anxiety and depression with physical and sensory functional difficulties, among adults living in five low and middle-income countries (LMICs).

A secondary data analysis was undertaken using population-based disability survey data from five LMICs, including two national surveys (Guatemala, Maldives) and 3 regional/district surveys (Nepal, India, Cameroon). 19,337 participants were sampled in total (range 1,617–7,604 in individual studies). Anxiety, depression, and physical and sensory functional difficulties were assessed using the Washington Group Extended Question Set on Functioning. Age-sex adjusted logistic regression analyses were undertaken to assess the association of anxiety and depression with hearing, visual or mobility functional difficulties.

The findings demonstrated an increased adjusted odds of severe depression and severe anxiety among adults with mobility, hearing and visual functional difficulties in all settings (with ORs ranging from 2.0 to 14.2) except for in relation to hearing loss in India, the Maldives and Cameroon, where no clear association was found. For all settings and types of functional difficulties, there was a stronger association with severe anxiety and depression than with moderate. Both India and Cameroon had higher reported prevalences of physical and sensory functional difficulties compared with Nepal and Guatemala, and weaker associations with anxiety and depression

Parental perspectives on care for sleep in children with cerebral palsy: a wake-up call

HULST, Raquel Y
VOORMAN, Jeanine M
PILLEN, Sigrid
KETELAAR. Marjolijn
VISSER-MEILY Johanna M A
VERSCHUREN, Olaf
June 2020

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Purpose: Sleep problems are common in children with cerebral palsy (CP) and have a large impact on child health and family functioning. This qualitative study aimed to explore parental perspectives regarding the care for sleep of their young child (age 1–8 years) with CP.

 

Materials and methods: Individual, semi-structured interviews were conducted with eighteen parents of a child with CP (GMFCS levels I-V). Inductive thematic analysis of the data was performed within each of the three preidentified domains: 1) Current situation; 2) Concerns; 3) Needs.

 

Results: In total, sixteen themes were identified across the three domains. Within the families’ Current situation, parents expressed various issues concerning the care for sleep of their child both at night and during daytime, which are hampered by perceived deficiencies in healthcare, such as limited attention for sleep and lack of knowledge among health professionals. Themes within the Concerns and Needs domains encompassed experiences in the home environment relating to child, family and social aspects, while experiences in the healthcare setting included clinical practices and attitudes of healthcare professionals, as well as the broader organisation of care for sleep.

 

Conclusions: Parents face numerous challenges caring for their child’s sleep and the burden placed on families by sleep problems is underappreciated. In order to break the vicious circle of sleep problems and their disastrous consequences on the wellbeing of families, we need to wake up to parent-identified issues and shortcomings in healthcare. Care for sleep should be integrated into paediatric rehabilitation through routine inquiries, using a family-centered and multidisciplinary approach.

Access to basic needs and health care for Malawian prosthetic and orthotic users with lower limb physical disabilities: a cross-sectional study

MAGNUSSON, Lina
FINYE, Clifford
ENSTEDT, Catrin
May 2020

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The aim of this study was to investigate access for Malawian prosthetic and orthotic users with lower limb disabilities to basic human rights such as health and a standard of living adequate for health, education, work, marrying and establishing a family, and voting. A further aim was to investigate differences among subgroups based on gender, level of income, and residential location.

A cross-sectional design and a questionnaire were used to collect data from 83 participants.

 

Disability and Rehabilitation

https://doi.org/10.1080/09638288.2020.1752316

Cross-cultural adaptation and psychometric evaluation of the Malay version of the Neck Disability Index

LIM, H H R
TAN, S T
TANG, Z Y
KOH, E Y L
KOH, K H
May 2020

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Purpose: Translating the Neck Disability Index (NDI) into the Malay language (NDI-M); evaluation of psychometric properties in patients with neck pain.

 

Methods: The NDI-M was translated according to established guidelines. In the first visit, 120 participants completed the NDI-M, visual analogue scale (VAS) for pain and demographic details. 98 participants returned to complete similar questionnaires and the Global Rating of Change (GRoC) scale. The NDI-M was evaluated for internal consistency, test-retest reliability, content validity, construct validity and responsiveness.

 

Results: The NDI-M demonstrated excellent internal consistency (Cronbach’s α = 0.84) and good test-retest reliability (ICC2,1 = 0.79). Content validity was confirmed with no floor or ceiling effects. Construct validity was established revealing three-factor subscales explaining 68% of the total variance. The NDI-M showed a moderate correlation with VAS (Rp = 0.49, p < 0.001). Regarding responsiveness, a moderate correlation between NDI-M change scores and VAS change scores was found (Rp = 0.40, p < 0.001). However, there was no significant correlation between NDI-M with GRoC (Rs = 0.11, p = 0.27).

 

Conclusions: The NDI-M is a reliable and valid tool to measure functional outcomes in patients with neck pain. It is responsive in detecting changes in pain intensity during a patient’s rehabilitation journey.

Access to basic needs and health care for Malawian prosthetic and orthotic users with lower limb physical disabilities: a cross-sectional study

MAGNUSSON, Lina
FINYE, Clifford
ENSTEDT, Catrin
May 2020

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Purpose: To investigate access to basic human rights such as health, a standard of living adequate for health, education, work, marrying and establishing a family, and voting for prosthetic and orthotic users with lower limb disabilities in Malawi.

 

Materials and methods: A cross-sectional design and a questionnaire were used to collect data from 83 participants.

 

Results: Most participants reported their overall physical and mental health as good (60 [72%] and 50 [60%], respectively) and said they could access medical care (69 [83%]). Fifty (60%) participants had access to food, 72 (87%) had access to basic water, and 55 (66%) lived in housing adequate for their health. Most participants had studied in school (74 [89%]) but only 27 (33%) of the participants were working. Forty-three (52%) were married and 53 (64%) had children. Seventy-six (92%) participants could vote if they wished.

 

Conclusions: Rurality and high costs of transport and medication increase the barriers to accessing several basic human rights for people with lower limb physical disabilities. Interventions to target these barriers and increase access to secondary school, employment, and income could improve health equity for people with physical disabilities in Malawi and similar contexts.

Functional outcome of stroke inpatients according to human immunodeficiency virus status: A feasibility study

HARTLEY, Tasneem
BURGER, Marlette
ESTERHUIZEN, Tonya M
INGLIS-JASSIEM, Gakeemah
March 2020

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Background: Stroke in human immunodeficiency virus positive (HIV+) individuals is becoming an increasing concern. Being significantly younger than typical stroke patients, the impact of functional challenges on quality of life and burden on society becomes more eminent.

 

Objectives: This feasibility study aims to determine the requirements for a large descriptive cohort, to adequately describe the functional outcome of stroke patients with varying HIV status.

 

Method: All stroke patients meeting the inclusion criteria were recruited over a 6-month period at a South African inpatient rehabilitation centre. Data were collected on admission and discharge using outcome measures including the Barthel Index (BI), Berg Balance Scale (BBS) and the use of assistive devices used to describe independence with activities of daily living (ADL), mobility and safety post-stroke. Statistical analysis was performed using Stata version 14.2.

 

Results: The feasibility study identified appropriate procedures and barriers to a successful study in addition to describing preliminary data on participant demographics, relevant medical history and functional outcomes post-stroke. Limitations that affected feasibility included minimal recruitment sites, length of data collection period, timely communication of participant discharge plans and dates, and confirmation of participant HIV status. An appropriate comparison between sub-groups could not be made because of disproportionate group sizes, median age differences and no assessor blinding.

 

Conclusion: To increase generalisability and the understanding of the unique HIV+ stroke profile, multiple recruitment sites, longer data collection periods, assessor blinding and age-matched groups with HIV status confirmation are recommended.

 

 

African Journal of Disability, Vol 9, 2020

Development of the MobQoL patient reported outcome measure for mobility-related quality of life

BRAY, Nathan
HAF SPENCER, Llinos
TUERSLEY, Lorna
TUDOR EDWARDS, Rhiannon
March 2020

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Purpose: To examine how mobility and mobility impairment affect quality of life; to develop a descriptive system (i.e., questions and answers) for a novel mobility-related quality of life outcome measure.

 

Materials and methods: Data were collected through semi-structured interviews. Participants were recruited predominantly from NHS posture and mobility services. Qualitative framework analysis was used to analyse data. In the first stage of analysis the key dimensions of mobility-related quality of life were defined, and in the second stage a novel descriptive system was developed from the identified dimensions.

 

Results: Forty-six interviews were conducted with 37 participants (aged 20–94 years). Participants had a wide range of conditions and disabilities which impaired their mobility, including cerebral palsy, multiple sclerosis, and arthritis. Eleven dimensions of mobility-related quality of life were identified: accessibility, safety, relationships, social inclusion, participation, personal care, pain and discomfort, independence, energy, self-esteem, and mental-wellbeing. A new outcome measure, known as MobQoL, was developed.

 

Conclusions: Mobility and mobility impairment can have significant impacts on quality of life. MobQoL is the first outcome measure designed specifically to measure the impact of mobility on quality of life, and therefore has utility in research and practice to measure patient outcomes related to rehabilitation.

Pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy

VAN GORP, Marloes
DALLMEIJER, Annet J
VAN WELY, Leontien
DE GROOT, Vincent
TERWEE, Caroline B
FLENS, Gerard
STAM, Henk J
VAN DER SLOT, Wilma
ROEBROECK, Marij E
December 2019

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Purpose: Investigate pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy compared to references.

 

Materials and methods: Young adults with cerebral palsy (n = 97, aged 21–34 years) and age-matched references from the general population (n = 190) rated pain using a numeric rating scale and fatigue, depressive symptoms, sleep disturbance and global health using Patient-Reported Outcomes Measurement Information System® short forms. Scores were compared between cerebral palsy subgroups and the reference population. Correlation coefficients and linear regression analyses assessed interrelationships of health issues and associations with global health.

 

Results: Individuals with Gross Motor Function Classification System level I had less pain, fatigue and depressive symptoms, while individuals with levels II and III–V had more pain (53% and 56%, p < 0.001) and those with levels III–V more fatigue (39%, p = 0.035) than references (pain: 26%, fatigue: 14%). Pain and fatigue were more interrelated (correlation coefficients: 0.71 vs. 0.41) and stronger associated with global mental health in individuals with cerebral palsy.

 

Conclusions: Young adults with Gross Motor Function Classification System levels II–V report more pain and those with levels III–V report more fatigue than references. Pain and fatigue are highly interrelated and specifically relate to mental health in individuals with cerebral palsy.

How pain management for children with cerebral palsy in South African schools complies with up-to-date knowledge

JOHNSON, Ensa
NILSSON, Stefan
ADOLFSSON, Margareta
November 2019

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Background: Pain in children with cerebral palsy (CP) has its sources in musculoskeletal problems that can influence learning in a school setting. Best pain management is essential for these children, but school staff may not keep up to date with the latest developments and interventions. Therefore, staff’s perceptions of beneficial strategies may not comply with contemporary scientific knowledge about effective evidence-based interventions.

 

Objectives: This study investigated how pain management intervention for children with CP in South African schools complied with international scientific knowledge about evidence-based interventions. The intention was to provide support for an update of knowledge on both individual level (i.e. professionals) and system level (i.e. decision makers).

 

Method: Five focus groups were conducted with staff members at five schools for children with special educational needs in South Africa. Manifest and latent content analyses of professional statements identified interventions reported as beneficial and related them to higher and lower levels of intervention evidence as reported at the time of data collection.

 

Results: Most treatment strategies concerned motor functioning that fell within the framework of physiotherapists and occupational therapists. Access to orthopaedic expertise was limited, waiting times were long and medication for spasticity treatment was not offered.

 

Conclusion: A discrepancy between published evidence and clinical practice for pain management in children with CP in South African school settings was noted. Suggestions for improved early intervention to identify children’s hips at risk through surveillance programmes; and orthopaedic management are proposed to prevent deformities and unnecessary suffering in South African children with CP.

 

 

African Journal of Disability, Vol 8, 2019

Exploring barriers to physical activity of patients at the internal medicine and surgical wards: a retrospective analysis of continuously collected data

KOENDERS, Niek
WEENK, Mariska
VAN DE BELT, Tom H
VAN GOOR, Harry
HOOGEBOOM, Thomas J
BREDIE, Sebastian J H
November 2019

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Purpose: To analyse physical activity of patients during their hospital stay and to explore the relationship between physical activity and barriers to physical activity.

 

Methods: This was a secondary analysis of physical activity data for patients admitted to the internal medicine and surgical wards. Physical activity data, collected with a wireless patch sensor, was operationalized as time spent lying, sitting/standing, and walking. Barriers to physical activity included patients’ pain levels, the use of urinary catheters, intravenous tubing, oxygen lines, drains, and level of dependence. Regression analysis explored the relationship between physical activity and barriers to physical activity.

 

Results: Physical activity data were collected in 39 patients (aged 27–88, mean 54 years) during hospital stay. Patients were admitted for a median of 10 d (interquartile range [IQR]: 7–15 d). These patients were lying for a median of 12.1 h (7.6–17.7), sitting/standing 11.8 h (6.3–15.7), and walking 0.1 h (0–0.3) per day. Time lying during the day related to pain levels (β = 0.4 h per unit increase in pain, p < 0.01) and drain use (β = 3.1 h, p < 0.01).

 

Conclusions: Patients spent the most time during the hospital stay lying in bed. Improved pain management and decreased drain use may be worth exploring to increase inpatient physical activity.

Access to primary care for persons with spinal cord injuries in the greater Gaborone area, Botswana

PAULUS-MOKGACHANE, Thato M.M.
VISAGIE, Surona J.
MJI, Gubele
September 2019

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Background: People with spinal cord injury (SCI) often have great need for healthcare services, but they report access challenges. Primary care access to people with SCI has not been explored in Botswana.

 

Objective: This study aimed to identify barriers and facilitators that users with spinal cord injuries experience in accessing primary care services in the greater Gaborone area, Botswana.

 

Methods: A quantitative, cross-sectional, observational study was conducted. Data were collected with a structured questionnaire from 57 participants with traumatic and non-traumatic SCI. Descriptive and inferential analysis was performed.

 

Results: The male to female ratio was 2.8:1. The mean age of participants was 40 years (standard deviation 9.59). Road traffic crashes caused 85% of the injuries. Most participants visited primary care facilities between 2 and 10 times in the 6 months before the study. Participants were satisfied with the services (63%) and felt that facilities were clean (95%) and well maintained (73.5%). Preferential treatment, respect, short waiting times and convenient hours facilitated satisfaction with services. Availability was hampered by insufficient provider knowledge on SCI as indicated by 71.9% of participants, and shortage of consumables (80.7%). Structural challenges (42.1% could not enter the facility by themselves and 56.5% could not use the bathroom) and lack of height-adjustable examining couches (66.7%) impeded accessibility. Cost was incurred when participants (64.9%) utilised private health services where public services failed to address their needs.

 

Conclusion: Primary care services were mostly affordable and adequate. Availability, acceptability and accessibility aspects created barriers.

 

 

African Journal of Disability, Vol 8, 2019

Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana

KYEREMATENG, Joana D.A
EDUSEI, Anthony
DOGBE, Joslin A.
OPUKU, Maxwell P.
NKETSIA, William
HAMMOND, Chrales
AFRIYIE, Sally A.
September 2019

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Background: Cerebral palsy (CP) is a non-progressive disorder of posture or movement caused by a lesion to the developing brain that results in functional limitations. The diagnosis of CP can vary from one child to another, causing family stress because of vague and unknown outcomes of the disorder. Although there are negative attitudes in Ghanaian societies towards primary caregivers and children with disabilities, fewer attempts have been made to understand their experiences.

 

Objectives: The main aim of this study was to explore the experiences of primary caregivers across the trajectory of the diagnosis (before, during and after) of CP in the setting of a tertiary hospital.

 

Method: Using Social Capital Theory as framework, 40 primary caregivers of children with CP, who were receiving treatment at a major referral hospital in Ghana, were interviewed about their experiences before, during and after diagnosis.

 

Results: The results that emerged from the thematic analysis were discussed as follows: experiences before diagnosis, experiences during the diagnosis and experiences after the diagnosis. Particularly, participants discussed their inability to access essential services such as education for their children with CP.

 

Conclusion: In light of systemic challenges faced by participants and their children with CP, the need for health policymakers to prioritise the public education about CP, promoting the well-being of caregivers and other implications of the study have been discussed.

 

 

African Journal of Disability, Vol 8, 2019

Prevalence, identification, and interference of pain in young children with cerebral palsy: a population-based study

TEDROFF, Kristina
GYLLENSVARD, Mirja
LOWING, Kristina
September 2019

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Objective: To explore the presence of pain, how pain was addressed by physicians and parents, and how pain affected everyday life in young children with cerebral palsy (CP).

 

Methods: Children with CP, aged 5–10 years, participated in this cross-sectional study. Data were collected from medical records spanning a period of two years and by a standardized parental interview that included six structured questions and the Pain Interference Index.

 

Results: A total of 118 children, with a mean age of 7.4 years (SD 1.5), participated in the study. The parents of 81% of these children were interviewed. Pain was reported in 52% of the children, and pain was present at all severity levels. The prescription of analgesics was documented in 25% of these children’s medical records. Fifty-nine percent of the children with pain received analgesics from their parents. Pain restricted the children’s everyday lives particularly concerning sleep, school work and being with friends.

 

Conclusions: Half of this group of young children with CP were reported to have pain. Pain restricted the children's everyday lives and seemed to be under-treated. If pain can be addressed early, the children's everyday lives are likely to be improved.

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