Addressing the Special Care Needs of Rural Children

PURPOSE: This study aimed to describe childhood conditions and caregiver challenges common in rural occupational therapy practice and goals parents set for their special-needs children. Descriptions of family routines and rituals were also considered because these occupations provide a context for occupational therapy interventions (Segal, 2004). This study identifies practice challenges faced by rural occupational therapy practitioners and offers insight into health disparities in a client population.

RATIONALE: According to the most recent Census data, 14 million children live in rural America (Rural Families Data Center [RFDC], 2010). Rural families experience extraordinary social and economic challenges, including low socioeconomic status and high rates of drug and alcohol abuse (RFDC, 2010). McManus et al. (2016) reported that Medicaid occupational therapy spending is lower for rural children compared with their urban peers, a difference largely attributable to use of services that are less specialized than those available to their urban peers. McManus et al. suggested a disparity in access to appropriate physical therapy and occupational therapy services for rural families.

Boshoff and Hartshorne (2008) found that rural occupational therapy practitioners provided services for a wide range of client types and areas of practice. Low practitioner experience levels, heavy clinical caseload demands on managers, and high client–practitioner ratios provide further challenges. McManus et al. (2016) noted that urban children with a developmental condition were significantly more likely to receive specialized physical therapy and occupational therapy treatments than rural children, who were more likely to receive generalist interventions.

METHOD: This study is a retrospective qualitative content analysis of reports of child functioning completed by parents of young children with developmental disabilities living in West Virginia. Content analysis provides a systematic and objective means to make valid inferences from written data in order to describe and quantify specific phenomena. Demographic information was gathered from separate intake data interviews of 25 children purposively drawn from 2013–2017 camp intake files. Purposeful sampling is widely used in qualitative research for the identification and selection of information-rich cases related to the phenomenon of interest.

We compiled demographic data on each child. Initial coding identified data related to family priorities and concerns, difficult daily routines, parent goals, and developmental level of the child. Secondary coding (incorporating the initial coding) was then used to identify patterns in the data. Inductive reasoning was used to condense the data into themes on the basis of valid inference and interpretation of emotional tones and perceptions.

RESULTS: Our analysis yielded a descriptive presentation of childhood conditions. The children’s diagnoses included cerebral palsy, visual impairment, neonatal abstinence syndrome, and a variety of genetic conditions. Three themes were identified reflecting parent goals and concerns: “participate in everything possible,” “trying to get her not to fight so much,” and “he needs assistance with everything.” When they were available in the data, descriptions of family routines and rituals were included.

CONCLUSION: This study provides a snapshot of these families’ perspectives, including the met and unmet needs they identified. It also offers a compelling picture of the diversity and complexity of conditions in clients served by rural occupational therapy practitioners. The results offer occupational therapy practitioners insight into how they can better understand the rural context of service delivery and challenge them to assume the role of policy advocate.

IMPACT STATEMENT: As noted in the American Occupational Therapy Association (2013) statement on health disparities, “Occupational therapy practitioners have the responsibility to intervene with individuals and communities to limit the effects of inequities that result in health disparities” (p. S7). Health disparities are intrinsic to rural occupational therapy practice. There is a powerful need for rural practitioners to serve as advocates to increase access to specialty health services.

References

American Occupational Therapy Association. (2013). AOTA’s societal statement on health disparities. American Journal of Occupational Therapy, 67(6 Suppl.), S7–S8. https://doi.org/10.5014/ajot.2013.67S7

Boshoff, K., & Hartshorne, S. (2008). Profile of occupational therapy practice in rural and remote South Australia. Australian Journal of Rural Health, 16, 255–261. https://doi.org/10.1111/j.1440-1584.2008.00988.x

McManus, B. M., Lindrooth, R., Richardson, Z., & Rapport, M. J. (2016). Urban/rural differences in therapy service use among Medicaid children aged 0–3 with developmental conditions in Colorado. Academic Pediatrics, 16, 358–365. https://doi.org/10.1016/j.acap.2015.10.010

Rural Families Data Center. (2010). Strengthening rural families: America’s rural children. Washington, DC: Population Reference Bureau.

Segal, R. (2004). Family routines and rituals: A context for occupational therapy interventions. American Journal of Occupational Therapy, 58, 499–508. https://doi.org/10.5014/ajot.58.5.499