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O’Mahar et al. (2010)O’Mahar, K., Holmbeck, G. N., Jandasek, B., & Zukerman, J. (2010). A camp-based intervention targeting independence among individuals with spina bifida. Journal of Pediatric Psychology, 35(8), 848-856.
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Duration: One week, at night. |
- Goal Attainment Scale. |
Improvements in individual SB-related and social goals and gains in management of SB-related responsibilities and general tasks |
| Stage 1: collaborative identification of self-care and social goals; 2: daily group sessions involving psychoeducation and cognitive strategies 3: counselor monitoring of camper goals to: |
- Sharing of Spina Bifida Management Responsibilities (SOSBMR). |
| (a) review goals, (b) review steps to achieve goals, (c) discuss barriers (d) discuss how the goals can be achieved. |
- Spina Bifida Independence Survey (SBIS). |
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- Knowledge of Spina Bifida measure (KOSB) |
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Harr et al. (2011)Harr, N., Dunn, L., & Price, P. (2011). Case study on effect of household task participation on home, community, and work opportunities for a youth with multiple disabilities. Work, 39(4), 445-453.
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Duration: 8 weeks. |
- Arc’s Self-Determination Scale (SDS), Adolescent Version |
CHORES: Overall performance improved in 17 pre-test and 19 post-test tasks, but declined for 16 tasks at follow-up. |
| - Setting intervention goals; - Instructions on language and behavior: praise, rewards, environmental structure, repetitive verbal, visual and physical cues. – Position and environmental adjustments. – Compiling a checklist – Reward system. – In-person and telephone-based monitoring |
- Children Helping Out: Responsibilities, Expectations, and Supports (CHORES) |
SDS: increased from the 57th to 78th percentile at follow-up. |
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- Canadian Occupational Performance Measure (COPM) |
COPM: performance and satisfaction scores for washing the dishes improved from pre- to post-test and from post-test to follow-up. |
Sawatzky et al. (2012)Sawatzky, B., Rushton, P. W., Denison, I., & McDonald, R. (2012). Wheelchair skills training programme for children: A pilot study. Australian Occupational Therapy Journal, 59(1), 2-9. PMid:22272877. http://doi.org/10.1111/j.1440-1630.2011.00964.x
http://doi.org/10.1111/j.1440-1630.2011....
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Duration: 9 hours on two consecutive Saturdays. |
- Wheelchair Skills Test (WST) |
Wheelchair skills improved (WST increased from 66 to 75) |
| Skills were taught via verbal explanations and demonstrations, breaking down the components of each skill. One 1-hour wheelchair maintenance session conducted by parents. |
- Activity Scale for Kids (ASK) |
- Questionnaire: revealed three themes: (I) developing independence; (II) improving wheelchair skills; and (III) reducing shoulder pain. |
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- Impact questionnaire |
Community participation declined, but was not statistically significant. |
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Holbein et al. (2013)Holbein, C. E., Murray, C. B., Psihogios, A. M., Wasserman, R. M., Essner, B. S., O’hara, L. K., & Holmbeck, G. N. (2013). A camp-based psychosocial intervention to promote independence and social function in individuals with spina bifida: moderators of treatment effectiveness. Journal of Pediatric Psychology, 38(4), 412-424.
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Duration: one week, at night. |
- Goal Attainment |
Gains in health goals; responsibility for tasks involving communication, walking, general self-care, skin care, catheterization and intestinal programs. None of the statistically significant findings were clinically significant. |
| Three main components: (1) establishing goals, (2) counselor monitoring of these goals, and (3) daily 1-hour-long workshops. |
- Social Skills Measure |
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- Social Acceptance subscale from Harter’s Self Perception Profile |
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- Sharing of Spina Bifida Management Responsibilities (SOSBMR). |
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- Spina Bifida Independence Survey (SBIS). |
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Donlau et al. (2013)Donlau, M., Mattsson, S., & Glad-Mattsson, G. (2013). Children with myelomeningocele and independence in the toilet activity: a pilot study. Scandinavian Journal of Occupational Therapy, 20(1), 64-70.
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Duration: 2 home visits were conducted with 16 families, 3 with 6 families, with a median 40-day interval (average = 60 days, range = 20-191) between the first and last visit. |
- Structured observation manual. |
- Increased independence in the CIC and TRI groups |
| Home visit by a urotherapist and occupational therapist and to observe toileting performance. Environmental adjustments as needed. Setting individual goals. A spreadsheet was given to each child to record performance in hygiene-related tasks. Tasks performed independently by the child were written in black, those that required support in red, and training tasks in green. |
- Goal Attainment Scale (GAS) |
- Individual goals: All the children improved and 17 achieved their individual goal or did more than expected. |
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- Canadian Occupational Performance Measure (COPM) |
- The performance scores of the children (n = 16) in the COPM showed a significant negative difference between the first and last home visit (m= 5.6 at the outset, m =3.5 after training; p = 0.008) |
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Khan et al. (2015)Khan, F., Amatya, B., Ng, L., & Galea, M. (2015). Rehabilitation outcomes in persons with spina bifida: a randomized controlled trial. Journal of Rehabilitation Medicine, 47(8), 734-740.
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Duration: 30-minute individual therapy sessions, 2-3 times a week for 6 weeks |
- Guy’s Neurological Disability Scale (NDS) |
the intervention group improved significantly at the 3-month follow-up for the primary and secondary outcomes, with moderate- to -large effect sizes (r): urinary / intestinal dysfunction (AUA, UDI6, IIQ7, WFIS); and cognitive function: NDS “cognitive” and “mood”; DASS “depression”, “anxiety” and “stress”, “psychological symptoms”; “active coping” and “self-efficacy” scores |
| Physical reconditioning program, wheelchair assessment skill reacquisition tasks and adaptive techniques for the whole body. Participants subsequently took part in similar maintenance programs at home or in the community. In addition to the outpatient rehabilitation program, participants in the treatment group received individualized care focused on self-care, continence and skin care education, and cognitive-behavioral program for more than 4-6 weeks. |
- Urogenital Distress Inventory (UDI6) |
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- American Urological Association Symptom Index (AUA) |
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- Incontinence Impact Questionnaire (IIQ7) |
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- Wexner Faecal Incontinence Score (WFIS) |
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- Depression Anxiety Stress Scale (DASS) |
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- McGill Quality of Life Questionnaire (MQOL) |
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- Brief COPE scale (B-COPE) |
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- Generalized Self-Efficacy Scale (GSE) |
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Dicianno et al. (2016a)Dicianno, B. E., Fairman, A. D., McCue, M., Parmanto, B., Yih, E., Mccoy, A., Pramana, G., Yu, D. X., McClelland, J., Collins, D. M., & Brienza, D. M. (2016a). Feasibility of using mobile health to promote self-management in Spina Bifida. American Journal of Physical Medicine & Rehabilitation, 95(6), 425-437.
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Duration: 2 years |
Health outcomes: |
All the health and care outcomes improved significantly at the end of the 2-year period. |
| 4 main components: |
Function: Craig Handicap Assessment and Reporting Technique-Short Form (CHART-SF) |
There was a significant decline in emergency room visits between baseline and year 2. |
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Evidence-based guidelines on preventing and treating pressure sores; neurogenic depression, bladder and bowel control; nutrition and physical activity. |
Mood: Beck Depression Inventory-II (BDI-II) |
Costs associated with avoidable diseases did not differ significantly from those at the onset of the study. |
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Case management: The wellness plan consisted of 5 short-term, 5 long-term and 5 maintenance goals. Quarterly assessment meetings were conducted for 2 years, with access to unlimited telephone support and the possibility of scheduling additional visits. |
Quality of life: World Health Organization Quality of Life-Brief Form (WHOQOL-BREF) |
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Patient education: 10 modules that cover issues specific to individuals with SB and SCIs. |
Self-rated health: questionnaire |
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Incentives: participants were eligible to receive up to 4 US $ 25 gift vouchers each for progress towards their wellness goals. |
Care outcomes: |
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Perception of patient-centered care: The Patient Assessment of Chronic Illness Care (PACIC) |
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Knowledge of avoidable conditions: multiple choice questionnaire |
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Utilization and cost outcomes |
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Total medical and pharmaceutical costs. |
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Dicianno et al. (2016b)Dicianno, B. E., Lovelace, J., Peele, P., Fassinger, C., Houck, P., Bursic, A., & Boninger, M. L. (2016b). Effectiveness of a wellness program for individuals with spina bifida and spinal cord injury within an integrated delivery system. Archives of Physical Medicine and Rehabilitation, 97(11), 1969-1978.
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Duration: 1 year |
- Patient Assessment of Chronic Illness Care (PACIC). - WHOQOL-BREF. - Number of urinary tract infections (UTIs), skin lesions, emergency room visits due to UTIs or skin lesions, planned and unplanned hospitalization. |
Significant improvement in physical independence. There was a trend towards a decline in medical events for the intervention group. Significant improvement in self-management skills for the intervention group with considerable use of the system. |
| iMHere is a set of 6 modules (medication, bladder and intestinal management, skin care, depressive symptoms, exchanging messages) for Android smartphones. |
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Dicianno et al. (2017)Dicianno, B. E., Henderson, G., & Parmanto, B. (2017). Design of mobile health tools to promote goal achievement in self-management tasks. JMIR mHealth and uHealth, 5(7), e103.
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Duration: 2 years |
Evaluation and thematic classification of participants’ goals |
Fifteen themes were identified in the 750 wellness goals. |
| Evidence-based guidelines and case management provided full-time by a nurse and case management as described by Brad E. Dicianno et al. (2016b)Dicianno, B. E., Lovelace, J., Peele, P., Fassinger, C., Houck, P., Bursic, A., & Boninger, M. L. (2016b). Effectiveness of a wellness program for individuals with spina bifida and spinal cord injury within an integrated delivery system. Archives of Physical Medicine and Rehabilitation, 97(11), 1969-1978.. |
Of the 750 wellness goals, 669 (89%) were achieved and 81 (11%) were not. Male participants with SCI were more likely to achieve their goals than females or those with SB. Short-term goals were more likely to be achieved. |
Rice et al. (2017)Rice, L. A., Dysterheft, J. L., Sanders, E., & Rice, I. M. (2017). Short-term influence of transfer training among full time pediatric wheelchair users: A randomized trial. The Journal of Spinal Cord Medicine, 40(4), 396-404. PMid:26914856. http://doi.org/10.1080/10790268.2016.1149292
http://doi.org/10.1080/10790268.2016.114...
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Duration: 1 day |
- Transfer Assessment Instrument (TAI) |
The intervention group obtained significantly higher scores. There were no significant differences in social competence and self-perception. |
| Participants watched a 9-minute video describing important transfer-related components, including adequate arm positions, body positioning, conservation techniques, movement strategies and hand placement. The video breaks transfers down into three phases: set up, flight and landing. The recently learned skills were practiced via performance feedback. |
- Self-Perception Profile for Children (SPPC) |
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Kokkoni et al. (2018)Kokkoni, E., Logan, S. W., Stoner, T., Peffley, T., & Galloway, J. C. (2018). Use of an in-home body weight support system by a child with spina bifida. Pediatric Physical Therapy, 30(3), E1-E6.
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Duration: equipment available at home 24 hours a day, 7 days a week for 10 weeks. |
Feasibility: team observation |
Locomotor activity and involvement in sports during BWSS use increased at the end of the intervention. |
| (1) body weight support system, (2) simultaneous use of all the extremities and (3) involvement in sports activities. |
Affection: reported by parents on a 10-point scale |
Post-study PEDI and GMFM were very high across all domains, with the greatest improvements in posture and walking. |
| The technology was a semi-permanent BWSS constructed and installed by an engineering company (Enliten, LLC, Newark, Delaware). The 2 main features were the suspended support rails and counterweight system. |
Locomotor activity: number of steps and falls counted via weekly videos |
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Involvement in sports: type and duration of any sports activity counted via weekly videos |
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Mobility: GMFM |
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Gait: 6-minute walk test |
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Choi et al. (2019)Choi, E. K., Jung, E., Ji, Y., & Bae, E. (2019). A 2-step integrative education program and mHealth for self-management in Korean children with spina bifida: feasibility study. Journal of Pediatric Nursing, 49, e54-e62.
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Duration: 4-and-a-half-hour course over 6 sessions. |
School adjustment |
There was no difference in the five measures pre-test or the first or second measure post-test, except for the self-management behavior domain. Children with SB expressed their satisfaction in meeting other children with the same condition. |
| Different teaching methods (including a lecture and discussion), laboratory exercise (using a human anatomy model), as well as dramatization and group activities (using a board game addressing aspects of family life, school, friendship and the participants themselves). |
Knowledge of self-management |
| Based on the content of the integrative education program, an Android application called “Glowing Stars ™” was designed, selecting the indicators: self-monitoring of urination, defecation, skin care, taking medication, and mood. |
Self-efficacy |
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Self-management: Kennedy Krieger Independence Scale-Spina Bifida Version (KKIS-S) |
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Quality of life: Health-related quality of life (HRQOL) |
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Driscoll et al. (2019)Driscoll, C. F. B., Murray, C. B., Holbein, C. E., Stiles-Shields, C., Cuevas, G., & Holmbeck, G. N. (2019). Camp-based psychosocial intervention dosage and changes in independence in young people with spina bifida. Developmental Medicine and Child Neurology, 61(12), 1392-1399.
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Similar intervention to that |
- Sharing of Spina Bifida Management Responsibilities (SOSBMR) |
An increase in intervention dosage was associated with greater camper independence in executing SB-related self-management tasks. The dosage was not associated with changes in social skills. |
| - Spina Bifida Independence Survey (SBIS); |
| - Social Skills Measure |
| - Wechsler Abbreviated Scale of Intelligence; |
Zimmerman et al. (2019)Zimmerman, K., Williams, M. K., Arynchyna, A., Rocque, B. G., Blount, J. P., Graham, A., & Hopson, B. (2019). Program evaluation of camp V.I.P: promoting self-confidence and independence for patients with spina bifida. Journal of Pediatric Nursing, 47, 30-35. PMid:31026678. http://doi.org/10.1016/j.pedn.2019.04.014
http://doi.org/10.1016/j.pedn.2019.04.01...
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Duration: 3 days |
Questionnaire to assess participants’ growth in terms of confidence and independence and qualitative data for the open response sections. |
Most of the parents reported increased independence and confidence in the children and the formation of friendships. |
| 1) an immersive experience 2) carefully constructed challenges, such as adaptable skiing, ensuring the individual will be able to overcome the challenge, and e 3) SB-related educational activities. |
Peny-Dahlstrand et al. (2009)Peny-Dahlstrand, M., Ahlander, A. C., Krumlinde-Sundholm, L., & Gosman-Hedström, G. (2009). Quality of performance of everyday activities in children with spina bifida: a population-based study. Acta paediatrica, 98(10), 1674-1679. http://doi.org/10.1111/j.1651-2227.2009.01410.x.
http://doi.org/10.1111/j.1651-2227.2009....
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Duration: 11 sessions |
- COPM; |
Significant gains in performance and satisfaction in the COPM. OSA: no change. AMPS: no change. DEX: all the participants reported fewer executive function difficulties after intervention. Tower Test: 9 participants showed improved performance. |
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Patient-centered approach that identifies the skills to be learned via a problem-solving process focusing on four global strategies – goal, plan, do, check. |
- The Swedish |
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version of the Occupational Self-Assessment (OSA) tool; |
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- Assessment of Motor and Process Skills (AMPS); |
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- The Dysexecutive Questionnaire (DEX); |
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- Delis-Kaplan Tower Test |
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– Kaplan Executive Function System |
Steinhart et al. (2021)Steinhart, S., Raz-Silbiger, S., Beeri, M., & Gilboa, Y. (2021). Occupation Based Telerehabilitation Intervention for Adolescents with Myelomeningocele: A Pilot Study. Physical & Occupational Therapy in Pediatrics, 41(2), 176-191. PMid:32856511. http://doi.org/10.1080/01942638.2020.1807448
http://doi.org/10.1080/01942638.2020.180...
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Duration: 10-12 sessions lasting 30-60 minutes. |
Canadian Occupational Performance Measure (COPM) |
There were clinically significant improvements in performance and satisfaction post-intervention and at follow-up for trained and untrained goals. |
| Meeting with an occupational therapist trained in CO-OP via a teleconferencing application (Skype TM). |
Wee Functional Independence Measure (Wee-FIM) |
All the participants showed clinically significant improvements (greater than 4.5%) in their functional status according to the total Wee-FIM score. The change in PEDSQL 4.0 scores was inconclusive. Manual coding of the interview responses revealed 3 main themes: Intervention results, therapeutic relationship, remote delivery. |
| The main resources included (1) patient-centered goals chosen by the child; (2) use of global problem-solving strategies, “Goal Plan Do Check” and domain-specific strategies (3) session format (4) dynamic performance assessment; (5) enabling principles, designed to support the acquisition, generalization and transfer of skills; (6) guided discovery facilitated by the therapist; and (7) involvement of parents or another important person. |
PedsQL 4.0 Measurement Model for the Pediatric Quality of Life Inventory |
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Feedback interview |
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Field notes |
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Jennings et al. (2020)Jennings, M., Guilfoyle, A., Green, J., Cleary, Y., & Gowran, R. J. (2020). Octopus watch fosters family resilience by enhancing occupational engagement for children with spina bifida and/or hydrocephalus: pilot study. International Journal of Environmental Research and Public Health, 17(22), 8316.
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Duration: 16 days. |
Childhood executive functioning inventory (CHEXI), Semi-structured interview, Canadian occupational performance measure (COPM). |
Participants exhibited an average increase in physical activity of 36%. Executive function showed minimal change in working memory and more promising decline in inhibition. Average performance and satisfaction scores on the COPM rose from pre to post-test from 2.1 to 2.4. Three main themes emerged from the data: develop a routine, encourage independence and exhibit the watch. |
| The Octopus watch developed by HeyJoy was designed for children, teaching them the concepts of time and routine, while encouraging them to remain active using an integrated fitness tracker. It links time to activities by visual icons. More than 2000 ADL icons are available in the smartphone application that accompanies it, including in the following areas: self-care, play timer, domestic tasks and meal time. |
Choi et al. (2020)Choi, E. K., Jung, E., Bae, E., Ji, Y., & Lee, A. (2020). Two-step integrative education program and mHealth for Korean children with spina bifida: a quasi-experimental pre-post study. Journal of Pediatric Nursing, 51, e92-e99. http://doi.org/10.1016/j.pedn.2019.12.006.
http://doi.org/10.1016/j.pedn.2019.12.00...
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Duration: a half-day course (4.5 hours), six sessions. Experimental group 2 used the mHealth program daily for four weeks at home. |
School adjustment: scale |
This intervention program produced no significant difference in the quantitative results between the experimental and control groups, but qualitatively, the child participants and their parents responded positively to the program. |
| The children of experimental group 1 only underwent the integrated education program (IEP), while their experimental group 2 received both the IEP and mHealth programs. Control group children received no intervention. The IEP involves several teaching methods, such as lectures and discussions, laboratory exercises, dramatizations and group activities. The 'Glowing Stars ™' application includes self-monitoring of urination, defecation, skin care, drug use and mood state. |
Knowledge of self-management. Self-management knowledge scale |
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Self-efficacy: New General Self-Efficacy scale |
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Self-management behavior: Kennedy Krieger Independence Scale-Spina Bifida Version (KKIS-S) |
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Quality of life: Children's health-related quality of life (HRQoL) |
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