Very little is known on outcome measures for children with spina bifida (SB) in Zambia. If rehabilitation professionals managing children with SB in Zambia and other parts of sub-Saharan Africa are to instigate measuring outcomes routinely, a tool has to be made available. The main objective of this study was to develop an appropriate and culturally sensitive instrument for evaluating the impact of the interventions on children with SB in Zambia.
A mixed design method was used for the study. Domains were identified retrospectively and confirmation was done through a systematic review study. Items were generated through semi-structured interviews and focus group discussions. Qualitative data were downloaded, translated into English, transcribed verbatim and presented. These were then placed into categories of the main domains of care deductively through the process of manifest content analysis. Descriptive statistics, alpha coefficient and index of content validity were calculated using SPSS.
Self-care, mobility and social function were identified as main domains, while participation and communication were sub-domains. A total of 100 statements were generated and 78 items were selected deductively. An alpha coefficient of 0.98 was computed and experts judged the items.
The new functional measure with an acceptable level of content validity titled Zambia Spina Bifida Functional Measure (ZSBFM) was developed. It was designed to evaluate effectiveness of interventions given to children with SB from the age of 6 months to 5 years. Psychometric properties of reliability and construct validity were tested and are reported in another study.
Spina Bifida (SB) is one of the congenital malformations of the central nervous system that is a major and unrecognised expensive public health problem in much of Africa (Adeleye, Magbagbeola & Olowookere
Children with SB need specialists who can address problems related to hydrocephalus, neurogenic bowel and bladder, mobility, learning disabilities and functional limitations. They also require generalists who can help educate caregivers and address health promotion issues, including nutrition and exercise. Thus, a multidisciplinary team comprising neurosurgeons, neurologists, orthopaedic surgeons, urologists, physiotherapists, paediatricians, neuro-nurses, rehabilitation specialists, psychologists and social workers is what is recommended for the management of children with SB (Mitchell et al.
Studies performed on the management of children with SB in some African countries such as Nigeria, Cameroon, Kenya, Uganda and Zambia have reported challenges encountered in the management of SB (Adeleye et al.
The search strategies used were the Cochrane, Database Specification Review, Autodesk Certified Professional Journal Club, Database of Abstract Reviews Effects, Cochrane Controlled Trial Register, Comprehensive Microbial Resource, Health Technology Assessment and National Health Service Economic Evaluation Database from 1950 to January 2010. A total of 705 (
The results of the search showed that the instruments identified were the Gross Motor Function Measure (GMFM) Dimensions D and E, Pediatric Outcomes Data Collection Instrument Parent and Child versions, Gillette Functional Assessment Questionnaire Walking subscale, Functional Independence Measure for Children (WeeFIM), Pediatric Quality of Life Inventory, temporal–spatial gait parameters, O(2) cost during ambulation, Child Health Questionnaire, Functional Mobility Scale, Pediatric Evaluation of Disability Inventory (PEDI), CP QOL-Child, and QOL (KIDSCREEN), Bruininks-Osserestsky tests, Alberta Infant Motor Scale and Bayley Scale of Infant development (Harvey et al.
Based on the results of the literature search, it can be concluded that there is no empirical data showing evidence of the PEDI and WeeFIM being translated into any of the African languages and their usage in Africa. However, although the two measures have not been so easily available and perhaps applicable for Zambian children, there is a lot that could be learnt from the same measures. On the other hand, it is also extremely important to note that there has been a paradigm shift of thinking from a developmental focus to functional focus in paediatric rehabilitation. For instance, worldwide researchers and clinicians who have used the PEDI have highlighted variations in functional skill acquisition in clinical populations. Furthermore, the importance of recognising cultural differences and the value of documenting functional progress in relation to interventions must be upheld (Haley et al.
Additionally, there has been some debate over issues of culture and the importance of cultural validation of norm-referenced tests (Berg et al.
Inasmuch as facilitating international comparison is extremely essential in some cases, comparing the lifestyle of an American child with a typical Zambian child in terms of function may not be easily justifiable. This is because ethno-theories of most countries in the developed world are very different from those of the developing world because of cultural diversity. For example, Zambian children start crying for food at a later stage compared with Dutch and Turkish children (Willemsen & Fons
As evidence-based practice (EBP) and initiatives to improve the quality of healthcare and life in children with disabilities have grown around the world, recognition of the need to measure functional outcomes in all healthcare settings has also increased. While there has been such increasing emphasis on the provision of evidence by rehabilitation professionals worldwide (Kaplan
Considering the lack of specific outcome measures developed for evaluating the impact of interventions given to children with SB and lack of appropriate and culturally sensitive tools among the ones available, it was deemed necessary that a measure be developed in order to measure the level of functioning in children with SB in Zambia. In view of such limitations and the relevance of using a psychometrically sound instrument in paediatric rehabilitation, we set out to develop a culturally appropriate, multidisciplinary and sensitive functional measure for children with SB in Zambia and subsequently tested it for psychometric properties. The purpose of this paper was to describe the processes involved in the preliminary development and content validation of the Zambia Spina Bifida Functional Measure (ZSBFM).
The study was carried out at the University Teaching Hospital (UTH) and Beit Cure Hospital (BCH). Both the hospitals, which are the only centres providing specialised care to children with SB in Zambia, are found in Lusaka. The two hospitals were comprehensively informed of the nature of the study through letters of permission. The initial process of instrument development involved the identification of the main domains of care in children with SB through a nine-year retrospective study, while confirmation of domains was done through a systematic review of literature. Eventually, parents and caregivers of children with SB and youths with SB were recruited to participate in the process of item generation. Subsequently, expert clinicians managing children with SB validated the items, and ultimately the measure called ZSBFM was constructed. In total, four studies were carried out in the whole process of instrument development.
The methodology section comprises the mechanisms used to identify study participants, followed by the procedures that were undertaken to collect data. Eventually, methods of data analysis used in the studies will be presented.
Study samples for the studies involved in the development of the Zambia Spina Bifida Functional Measure.
Study 1: Retrospective study | Study 2: Systematic review | Study 3: Item generation study | Study 4: Content validity study and item–objective congruence evaluation |
---|---|---|---|
One thousand four hundred children with SB and hydrocephalus ( |
Appraised studies (external data) |
- Twenty youths with SB ( |
- Twelve clinicians ( |
Demographic details of the expert panel.
Expert identity | Profession/role | Highest qualification | Years of experience |
---|---|---|---|
A | Physiotherapist |
Diploma | 13 years |
B | Physiotherapist |
Bachelor’s | 15 years |
C | Physiotherapist |
Diploma | 28 years |
D | Neuro-nurse |
Diploma | 16 years |
E | Neuro-nurse |
Diploma | 11 years |
F | Neuro-nurse |
Diploma | 28 years |
G | Clinical officer |
Licentiate | 15 years |
H | Physiotherapist |
Master’s | 32 years |
I | Physiotherapist |
Master’s | 35 years |
J | Clinical officer |
Diploma | 40 years |
K | Neuropediatrician |
Master’s | 15 years |
L | Neurosurgeon |
Master’s | 20 years |
, Academic;
, Clinician.
The procedures involved in the process of data collection and final instrument construction will be presented in four sections:
Domain identification Domain confirmation Instrument preparation Item generation, content validation and item–objective congruence evaluation
The process of identifying the domains of care started by orientating three research assistants who are physiotherapists by profession. They were oriented on how to extract relevant information from the clinical files using a data-capturing sheet and eventually entering data into the SPSS database. Upon receiving ethical approval, permission from the hospital administrators of the two hospitals was sought. A checklist was then adapted from the assessment form routinely used for children with SB at the BCH. The viability of the checklist was tested by piloting and subsequently validated by three physiotherapists, three neuro-nurses, one orthopaedic surgeon and two neurosurgeons. Upon validating the checklist, domains were identified from the clinical files of children with SB and hydrocephalus identified from 2001 to 2010 (Mweshi et al.
To confirm the domains of care that were identified, a systematic review study was performed. The clinical question was:
What is the evidence that the functional domains of self-care, mobility, social function, participation and communication can be used to measure function in children with SB following an intervention in Zambia?
A critical appraisal of functional outcomes studies and commonly used functional outcome measures with their psychometric properties in measuring the impact of interventions was performed. This whole process was based on external data from four studies giving a sample size of 1135 participants (
Preparation for instrument development is essential before items are generated. Therefore, it becomes necessary to identify methods of administration, number of items testing each objective or subscale, item formats and test scoring in the preparation of instrument specifications.
The instrument is expected to be administered by clinicians with the help of primary caregivers, based upon their direct observations of the child’s behaviour in performing functional activities. To facilitate a multidisciplinary approach which is needed for SB management, the ZSBFM has been principally designed for use by physiotherapists, occupational therapists, neuro-nurses, neurosurgeons, orthopaedic surgeons and clinical officers in Zambia. It is expected to provide an examiner’s guide and a summary scoring form, with graph paper.
The establishment of the number of items began by a process of blueprint development. This was initiated by formulating a set of objectives reflecting the outcomes and critical areas to be assessed. Below is a list of objectives that were set:
to determine the levels of performance of self-care, mobility and social function in children with SB in their activities of daily living, to ascertain the ability of children with SB to communicate the functional needs in performing activities of daily living, to ascertain the ability of children with SB to participate in performing functional activities.
The next strategy was concerned with the total number of items that would make up the ZSBFM. Based on the numbers of items in commonly used measures such as the WeeFIM with 18 items, BDI with 61, GMFM with 88 and the PEDI with 241 items, the researchers made a resolve to develop a measure that would neither be too short nor too long.
The major content areas to be assessed included self-care, mobility and social function that appeared as column headings across the top of the table and critical areas assessed being communication and participation that appeared on the left side as row headings. At each intersection was a particular content-objective pairing and values in each cell reflecting the actual numbers of each item that were to be included in the proposed draft measuring instrument. The range of the number of items picked by the researchers was between 70 and 80. It was suggested that the total number of items for the three main domains would be between 50 and 60 items, while items on the sub-domains would be between 10 and 15 items each.
A total of 52 items were suggested to reflect the three main domains of which 26 items were earmarked for self-care, 18 items for mobility and 8 items for social function. With regard to communication, a total of 13 items were proposed, of which 5 items represented communication in self-care and 8 items communication in social function, while none was suggested for the domain of mobility. Participation was equally given a proportion of 13 items of which 5 items reflected participation in self-care, 3 items represented participation in mobility and 5 items were earmarked for participation in social function.
Blue print showing the number of portions and items that were proposed for developing the measure.
Objectives | Content of functional skills | |||
---|---|---|---|---|
Self-care | Mobility | Social function | Total | |
To determine the levels of performance of self-care, mobility and social function in children with SB in their activities of daily living | 26 | 18 | 8 | |
To ascertain the ability of children with SB to communicate the functional needs in performing activities of daily living | 5 | 0 | 8 | |
To ascertain the ability of children with SB to participate in performing functional activities | 5 | 3 | 5 | |
There are basically four classic scales or levels of measurement presented in literature being nominal, ordinal, interval and ratio scales. Well-renowned measures such as the GMFM 88 have utilised the scale in the use of the four-point ordinal scale (Avery et al.
The items of functional skills of children aged 6 months to 5 years are arranged into three sections. Section one has items on self-care, followed by the section on mobility and lastly social function. Instructions state: Please indicate by ticking (√) the statement that best describes the child’s ability to perform each of the following activities taking into consideration the appropriate age category. Please note that blocked spaces in the age categories of 6 months to 2 years and 2 years to 3 years show that the child is young for the activity in question. However, the scores to be awarded are from a range of 4 to 1, with the following interpretations:
Upon identifying and confirming the domains of care and formulating the specific instrument preparation guide, the researchers immediately went into specific item generation. This process was followed by the process of preliminary item validation and, subsequently, the congruence of the items was evaluated.
The process of item generation involved the qualitative enquiry of semi-structured interviews and focus group discussions (FGDs). A summary of questions asked in the interviews and focus groups is presented in Semi-structured interviews
A total of 20 semi-structured interviews were conducted in the study. Appointments with the research participants were made during the clinics at both hospitals. All the interviews were carried out at Cheshire Homes Rehabilitation Centre for children with disabilities. Before interviews started, informed consent was obtained from all participants and permission to record interviews was sought. Participants were asked what language they were comfortable with, and the main researcher identified a research assistant in instances where she was not so comfortable with the preferred language of the participant. Confidentiality was ensured and the participants were made comfortable by creating an atmosphere that facilitated freedom of expression. The first five interviews were conducted with youths and the next five with parents, or caregivers, followed by five youths and then the last five parents, or caregivers, giving a total of 20 interviews. Codes were given to the participants in order to facilitate easy analysis. Codes A1–A10 were given to youths who took part in the semi-structured interviews while B1–B10 to mothers or caregivers. For the purpose of quality listening, a maximum of three interviews were conducted in a day. This was meant to create ample time for the researcher to download the recorded interviews and transcribe them with ease. On average, interviews took between 45 minutes and 1 hour 30 minutes. Focus group discussions
Upon getting consent from parents, or caregivers, and assent from the youths with SB, dates and times for the two FGDs were set. The first FGD comprised youths with SB (
When investigating content validity, the interest is in the extent to which the measure represents the content domain (Waltz, Strickland & Lenz
In order to validate the items generated from the interviews and FGDs, appointments with 12 expert clinicians were arranged in person to explain the purpose of the evaluation. Letters explaining the aim, the purpose of the questionnaire and procedure of administration were given to each research participant. Subsequently, the experts were given the objectives of the measure and a list of generated items. They were asked to independently rate the relevance of each item using a 4-point rating scale: 1 not relevant, 2 somewhat relevant, 3 quite relevant and 4 very relevant.
Of paramount importance to data quality is the accuracy of the transcribed interviews and FGD notes (Waltz et al.
Descriptive statistics were used to analyse quantitative data by using SPSS version 17. The level of statistical significance was set at
The process of instrument construction involved compiling all the necessary components essential for the instrument measure. It involved designing the cover page presenting the title of the tool and the age limit for using the tool and the name of the instrument developer. Also found on the cover page is a provision for brief information about the interviewer, respondent and about the child concerning information on SB and services such as surgery, orthotics and physiotherapy and general instructions on the use. General instructions on awarding scores for the testing different functional skills to facilitate uniformity in assessing the levels of function in the children were also put in place. The items of functional skills of a child aged 6 months to 5 years are arranged into three sections with items on self-care, followed by the section on mobility and lastly social function. Instructions state: Please indicate by ticking (√) the statement that best describes the child’s ability to perform each of the following activities taking into consideration the appropriate age category. Please note that blocked spaces in the age categories of 6 months to 2 years and 2 years to 3 years show that the child is young for the activity in question. Lastly, the summary scoring form that provides the clinician with raw scores for each sub-section and also a graph for plotting in order to monitor if there is progress or no progress in the management programme was also compiled.
The results section presents the domains identified and confirmed, items generated from qualitative data, results of the content validation exercise and the item–objective congruence exercise. Subsequently, the process of instrument construction will be presented.
Domains of care were identified from an audit of 1400 children with SB and hydrocephalus over a period of 9 years. Categorically, social function (46%) was the highest domain of care provided, followed by HIV counselling to parents (32%), mobility (16%) and self-care (6%) (Mweshi et al.
Subsequently, the results of the literature search confirmed the already known three functional domains of self-care, mobility and social function and the two new contributions, being the domains of participation and communication that were identified and included. There is evidence that functional tools have potential to evaluate the impact of clinical interventions (Adolfsson et al.
Identified functional domains.
Retrospective study | Literature review | |
---|---|---|
Electronic search | Manual search | |
Social function | Self-care | Self-help skills |
HIV counselling | Mobility | Fine motor development |
Mobility | Social function | Gross motor development |
Self-care | Participation | Interpersonal skills |
Communication | Receptive language development | |
Expressive language development |
Identified functional domains.
Main functional domains | Sub-domains (new domains) |
---|---|
Self-care, mobility, social function | Participation and communication |
Statements generated from interviews of parents and youths were initially pooled and so were those from the focus groups of parents and youths. Eventually, the pooled data from the two different methods were combined to come up with one pool of results leading to a process known as triangulation. Methodological triangulation is the use of two or more different kinds of methods in a single line of inquiry (Risjord
Another female student, A5 shared:
‘I feel the urge to pass urine, but by the time I reach the toilet, my pants are wet. This makes me always to stay at home.’
The depth of such responses involved pure honesty and such would be quite difficult to share freely for most people. Pooling of items for some researchers is performed during literature search and they just get confirmed during FGDs (Nassar-Mcmillan et al.
The process of selecting items from pools of statements has been practised by several researchers (Babcock-Parziale & Williams ‘My child cannot feed himself although he is 4 years.’
The deduced item was self-feeding and the functional domain identified was self-care domain. An initial pool of 150 statements enabled the key concepts to be identified and after checking for redundancy, colloquialisms and ambiguity, the number of statements was reduced to 100 statements.
Pooling of statements from both semi-structured interviews and focus group discussions.
Deduced items (Parents/Caregivers) | Domain code | Deduced items (youths) | Domain code |
---|---|---|---|
Choice of food and drink | SC | Bowel opening, cleaning | SC |
Hand use and drinking | SC | Bladder and bowel control/friends | SC |
Self-feeding | SC | Bladder and bowel control | SC |
Feeding | SC | Bladder and bowel control | SC |
Hunger and thirst expression | SC | Bladder and bowel control | SC |
Brushing teeth | SC | Bladder and bowel control | SC |
Dressing and undressing | SC | Dressing and undressing/bathing | SC |
Dressing and undressing | SC | Dressing and undressing | SC |
Choices/feeding and clothes | SC | Sensation/self-care | SC |
Bathing | SC | Sensation/self-care | SC |
Bladder and bowel care | SC | Brushing teeth/washing face | SC |
Bladder control/not able to relate | SC/SF | Feeding | SC |
Bowel opening, cleaning, cooking food, dependency | SC/SF | Choices/feeding | SC |
Movement and standing | MO | Hand use | MO |
Sitting and moving | MO | Moving | MO |
Crawling, sitting and walking | MO | Movement | MO |
Walking | MO | Hand use | MO |
Hand use | MO | Moving | MO |
Moving | MO | Walking | MO |
Moving | MO | Talking | SF |
Walking | MO | Relationships | SF |
Talking | SF | Roles/participation | SF |
Playing/relating | SF | Can draw water, cooking food | SF |
Responsibility and participation | SF | Helping in daily routine chores/participation | SC/SF |
Talking and relationships | SF | Relationships | SF |
No interest in people | SF | Playing | SF |
Can draw water | SF | Interest in people | SF |
Language development/ hearing | SF | Exploring things | SF |
Exploring things | SF | Helping in daily routine chores/participation | SF |
No friends, stopped schooling | SF | Many friends/schooling | SF |
Talking and communication | SF | Talking and communication | SF |
SC, Self-care; MO, Mobility; SF, Social function.
The 78 items identified for the content validity evaluation.
Variables | Self-care (36 items) | Mobility (21 items) | Social function (21 items) |
---|---|---|---|
Changing positions in bed |
|||
Bilateral use of hands |
|||
Hearing |
|||
Interpersonal relationships |
|||
Communicating the urge to pass urine |
|||
Walking or crawling/shuffling on a flat surface |
|||
Undertaking a single task |
|||
Sitting with balance during bathing |
|||
Choice of clothes |
|||
Responding to touch in the lower limbs |
The frequencies of the ratings for the content validity results by the 12 expert specialists are evident in
Frequencies of ratings by the expert clinicians and Item Content Validity Indices.
No. | Items | Expert reviewer | Mean | s.d. | I-CVI | |||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | |||||
PT | PT | PT | CO | PT | PT | CO | MO | MO | ||||||||
1 | Thirst expression | 3 | 4 | 4 | 4 | 2 | 3 | 4 | 4 | 4 | 4 | 4 | 2 | 3.50 | 0.80 | 0.83 |
2 | Choice of drink | 4 | 3 | 4 | 2 | 2 | 4 | 3 | 3 | 3 | 3 | 3 | 1 | 2.92 | 0.90 | 0.75 |
3 | Opening the mouth | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 4 | 4 | 3 | 3 | 3.75 | 0.45 | 1.00 |
4 | Swallowing of fluids | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 2 | 3.83 | 0.58 | 0.92 |
5 | Use of hands in drinking | 4 | 3 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 3.83 | 0.39 | 1.00 |
6 | Preparing for a drink | 4 | 3 | 4 | 4 | 4 | 4 | 4 | 2 | 4 | 3 | 3 | 1 | 3.33 | 0.98 | 0.83 |
7 | Hunger expression | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 2 | 3.83 | 0.58 | 0.92 |
8 | Choice of food | 4 | 4 | 4 | 3 | 4 | 4 | 3 | 3 | 3 | 3 | 3 | 2 | 3.33 | 0.65 | 0.92 |
9 | Self-feeding of soft foods | 4 | 3 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 3 | 3 | 3.67 | 0.49 | 1.00 |
10 | Use of utensils when eating | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 2 | 4 | 4 | 3 | 3 | 3.58 | 0.67 | 0.92 |
11 | Chewing solid foods | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 3 | 3.83 | 0.39 | 1.00 |
12 | Serve food | 3 | 4 | 4 | 2 | 4 | 3 | 4 | 2 | 3 | 4 | 2 | 1 | 3.00 | 1.04 | 0.67 |
13 | Communicating the urge to pass urine | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4.00 | 0.00 | 1.00 |
14 | Removal of pants before passing urine | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3.83 | 0.39 | 1.00 |
15 | Change pants in cases of messing up | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3.92 | 0.29 | 1.00 |
16 | Communicating the urge to open bowels | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4.00 | 0.00 | 1.00 |
17 | Going to the toilet to open bowels | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3.92 | 0.29 | 1.00 |
18 | Sitting/squatting on a toilet/potty | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 3.83 | 0.39 | 1.00 |
19 | Cleaning self after opening the bowels | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 4 | 4 | 3 | 3 | 3 | 3.67 | 0.49 | 1.00 |
20 | Times of opening bowels in a day | 4 | 3 | 4 | 3 | 4 | 4 | 3 | 3 | 3 | 4 | 3 | 2 | 3.33 | 0.65 | 0.92 |
21 | Sitting with balance during bathing | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3.92 | 0.29 | 1.00 |
22 | Standing with balance during bathing | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3 | 3.83 | 0.39 | 1.00 |
23 | Brushing teeth | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 3 | 3 | 3.75 | 0.45 | 1.00 |
24 | Washing face | 4 | 3 | 4 | 3 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 2 | 3.58 | 0.67 | 0.92 |
25 | Choice of clothes | 4 | 3 | 4 | 2 | 2 | 3 | 3 | 2 | 3 | 3 | 3 | 2 | 2.83 | 0.72 | 0.67 |
26 | Wearing pants and shorts/skirt | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 2 | 3.75 | 0.62 | 0.92 |
27 | Wearing of shirt or dress | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 2 | 3.83 | 0.58 | 0.92 |
28 | Putting on socks | 4 | 3 | 4 | 3 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 3 | 3.67 | 0.49 | 1.00 |
29 | Putting on shoes | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 3 | 3.75 | 0.45 | 1.00 |
30 | Taking off shirt or dress | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3.92 | 0.29 | 1.00 |
31 | Taking off shoes | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 3 | 3.83 | 0.39 | 1.00 |
32 | Taking off socks | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 3 | 3.83 | 0.39 | 1.00 |
33 | Taking off shorts/skirt and pants | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3.92 | 0.29 | 1.00 |
34 | Responding to touch in the lower limbs | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 3.92 | 0.29 | 1.00 |
35 | Responding to pain in the lower limbs | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4.00 | 0.00 | 1.00 |
36 | Communicating the presence of pressure sores | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4.00 | 0.00 | 1.00 |
37 | Changing positions in bed | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4.00 | 0.00 | 1.00 |
38 | From lying to sitting | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 4 | 3.92 | 0.29 | 1.00 |
39 | From sitting to standing | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 3 | 3.83 | 0.39 | 1.00 |
40 | From standing to sitting down on the floor | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 3 | 3.83 | 0.39 | 1.00 |
41 | From sitting down on the floor to kneeling | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 3 | 3 | 3.75 | 0.45 | 1.00 |
42 | From kneeling to sitting | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 3 | 3 | 3.75 | 0.45 | 1.00 |
43 | From kneeling to standing | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 3 | 3 | 3.75 | 0.45 | 1.00 |
44 | Bilateral use of hands | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4.00 | 0.00 | 1.00 |
45 | Unilateral use of hand | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 3 | 3.83 | 0.39 | 1.00 |
46 | Lifting objects up | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 4 | 3 | 3 | 3.75 | 0.45 | 1.00 |
47 | Fine use of hands | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3.92 | 0.29 | 1.00 |
48 | Walking or crawling/shuffling on a flat surface | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 4 | 3.92 | 0.29 | 1.00 |
49 | Walking or crawling/shuffling up stairs | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 3 | 4 | 3.83 | 0.39 | 1.00 |
50 | Walking or crawling/shuffling down stairs | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 3 | 3 | 4 | 3.75 | 0.45 | 1.00 |
51 | Moving within the home buildings | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 4 | 3.92 | 0.29 | 1.00 |
52 | Moving within buildings other than the home | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 3 | 3 | 3.75 | 0.45 | 1.00 |
53 | Moving outside buildings | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3 | 3 | 3.75 | 0.45 | 1.00 |
54 | Carrying objects while moving | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 2 | 3 | 3 | 3.58 | 0.67 | 0.92 |
55 | Picks up objects | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3.92 | 0.29 | 1.00 |
56 | Jumping | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 3 | 2 | 3.67 | 0.65 | 0.92 |
57 | Running | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3 | 4 | 3 | 2 | 3.58 | 0.67 | 0.92 |
58 | Hearing | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4.00 | 0.00 | 1.00 |
59 | Response | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3.92 | 0.29 | 1.00 |
60 | Language development | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4.00 | 0.00 | 1.00 |
61 | Time orientation | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 4 | 3.92 | 0.29 | 1.00 |
62 | Self-information | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 3 | 3.83 | 0.39 | 1.00 |
63 | Vocabulary development | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3.92 | 0.29 | 1.00 |
64 | Expression | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3.92 | 0.29 | 1.00 |
65 | Conversation | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3.92 | 0.29 | 1.00 |
66 | Interpersonal relationship | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3.92 | 0.29 | 1.00 |
67 | Family relationships | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4.00 | 0.00 | 1.00 |
68 | Informal relationships | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3 | 3.83 | 0.39 | 1.00 |
69 | Interest in exploring new things | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3.92 | 0.29 | 1.00 |
70 | Playing by self | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3 | 3 | 3.75 | 0.45 | 1.00 |
71 | Playing with objects | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3 | 3.83 | 0.39 | 1.00 |
72 | Playing with adults | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 3 | 3 | 3 | 3.67 | 0.49 | 1.00 |
73 | Playing with peers | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4.00 | 0.00 | 1.00 |
74 | Undertaking a single task | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3.92 | 0.29 | 1.00 |
75 | Undertaking multiple tasks in the home | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3.92 | 0.29 | 1.00 |
76 | Undertaking multiple tasks outside the home | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 3 | 3.83 | 0.39 | 1.00 |
77 | Undertaking daily routine | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 3 | 3.83 | 0.39 | 1.00 |
78 | Going to pre-school | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 3.92 | 0.29 | 1.00 |
PT, Physiotherapy; N, Nurse; CO, Clinical Officer; MO, Medical Officer; I-CVI, Item Content Validity Indices.
I-CVIs were calculated for each item by counting the number of experts who rated the items as either somewhat relevant (3) or very relevant (4) and then dividing that total by the number of expert specialists (Polit & Beck
When the 78 items were exposed to reliability analysis, the alpha coefficient of 0.98 was computed. When the items were further analysed in categories of the three main domains, the results showed that the alpha coefficient for self-care was 0.97, mobility was 0.95 and social function had an alpha of 0.95. Therefore, results for both the CVI and alpha coefficient were above 0.80, indicating an acceptable level of content validity (Waltz et al.
Based on such results, decisions had to be made on the following three items:
choice of drink (self-care) choice of clothes (self-care) serve food (self-care).
It was recommended that item 12 (Serve food) under self-care domain be removed thus reducing the number of items to 77. However, items 2 (Choice of drink) and 25 (Choice of clothes) were recommended for reliability evaluation.
The measure with 77 items was finally assembled including the preparation of the cover page with important information, directions, scoring keys and answer sheets. Subsequent to compiling all important documents, the first draft of the tool, titled ‘Zambia Spina Bifida Functional Measure’ (ZSBFM), designed for evaluating the performance of functional skills in children with SB in Zambia, was developed.
The ZSBFM is aimed at measuring the impact of interventions like surgery and physiotherapy given to children with SB from the age of 6 months to 5 years. The ZSBFM draft had two sections: Section A: demographic data, while Section B: 77 items categorised in three domains of self-care, mobility and social function. From the 77 items, 37 (48%) were under the self-care domain, 19 (25%) mobility domain and 21 (27%) under the social function domain.
Faced with the clinical problem of lack of evidence on the impact of interventions given to children with SB, the researchers set out to develop a tool expected to fill the gap that existed. The intent was to locally generate a measure with psychometric adequacy that could readily be available, affordable, appropriate and culturally sensitive in assessing the performance of functional skills in children with SB in Zambia. A retrospective study was conducted to identify domains and through a systematic review, the domains were confirmed. Subsequently, items were generated, content validation was performed, and subsequently the first draft was constructed.
Domains of care identified from the retrospective study showed that social function was the highest care provided, followed by HIV counselling to parents, mobility and self-care. Mobility performed fairly in the management of children with SB in Zambia. Although mobility performed fairly, such impairments are very common among individuals with SB (Haley et al.
Even though self-care was rated poorly in terms of care given to children with SB in the current study, literature reveals that only about half of children with SB are able to live independently and almost a quarter of them experience both urinary and faecal incontinence in their lives (Adeleye et al.
Participation and communication were identified through a systematic review as new sub-domains recommended by the ICF-CY (Klang
The process of item generation involved the use of two methods, being semi-structured interviews and FGDs. Several simultaneous steps have been reported in the process of item generation, which eventually led to a pool of items based on a thorough literature review, existing scales, expert opinion (Delamere, Wankel & Hinch
The concept of validity refers to the degree to which an instrument measures what it is supposed to measure (Dekker, Dallmeyer & Lankhorst
A draft measure titled ZSBFM for children with SB in Zambia has been developed. It is meant to help clinicians managing children with SB measure the impact of interventions such as surgery and physiotherapy given to children aged 6 months to 5 years. The measure can provide an opportunity to assess children with SB in performing distinct functional skills based on 77 items categorised into the three main domains of self-care, mobility and social function. The draft ZSBFM has an acceptable level of content validity. Psychometric properties of reliability and validity were measured through Cronbach’s alpha reliability and later I-CVIs and S-CVIs.
The authors wish to thank the University of Zambia for the financial and material support towards this study. Gratitude also goes to the management and staff of BCH and UTH for allowing the study to be carried out at the hospitals and the research assistants Mr Ephron Soko, Mr Lieto and Mr Edwin Zulu. Special thanks also go to Dr Akakandelwa, University of Zambia, and Prof. Waltz, Prof. Vance of the USA and Dr Kafaar Zuhayr of Stellenbosch University in South Africa for helping in the statistical analyses. Finally, gratitude goes to my supervisors Prof. Seyi Ladele, Dele, Prof. Shalalukey Ngoma and Prof Munalula-Nkandu for guidance.
The study received partial funding from the University of Zambia as part of Staff Development.
The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.
M.M.M. conceptualised the study. S.L.M., M.P.S. and E.M.N. supervised the protocol development, data collection, data analysis and generation of the manuscript. Z.K. did the final statistical analysis of the data presented. All the authors participated in the internal review and finalisation of the article.
Summary of questions used in the semi-structured interviews and focus group discussions.
-How has been the experience of taking care of your child? |
-What happens when your child wants to eat or drink something? Can she/he express the need for something to eat or drink? |
-How is toileting done? |
-How is the movement in bed? Can your child turn in bed? Change positions in bed? |
-Does your child go to school? |
-Does your child recognise her/his name? respond to stimulus? |
-How independent are you? |
-Can you manage to prepare water for a bath if you have no tap water? |
-What are your responsibilities? |
-How is the sensation in the legs? |
-How mobile are you and how do you function in the home? |
-Do you go to school? |
-Can we discuss experiences of taking care of our children |
-Let us discuss issues of movement: |
-Can we talk about movements the children can do: |
-Let us talk about communication and relationships |
-Let us talk about participation of our children: |
-Let us talk about personal care: |
-Can we discuss our personal experience of independence |
-Let us discuss issues of movement: |
-Can we talk about your movements: |
-Let us talk about communication and relationships |
-Let us talk about your participation: |
-Let us talk about personal care: |