‘I Wish the School Had a Better Understanding of the Diagnosis’: parent perspectives on educational needs of students with sex chromosome aneuploidies

Students with sex chromosome aneuploidies (SCAs) are at increased risk for learning disabilities and often require individualized supports in the school setting. Parents of students with rare disorders such as SCAs possess a unique understanding of their child’s educational experiences and play a crucial role in the development of successful school support plans. This international survey study aimed to inductively capture parent perspectives on educational needs and supports for students with SCAs. Parents of youth with SCAs ages 5-21 years (n = 305) provided free-text responses to open-ended questions about their child’s education. Qualitative content analysis using a bioecological systems framework resulted in three overarching themes. Overall, parents identified multiple factors related to the SCA diagnosis that act as barriers to learning, a strong need for school-based social and emotional supports, and elusive or incomplete educational support plans. Based on these findings, we recommend developing robust family-school partnerships, increased collaboration between the school and the child’s medical team, and acknowledgement of the significant role the genetic condition plays in the educational experiences of students with SCAs. Specific suggestions for school support plans for students with SCAs are explored, such as providing school-based behavioral health supports and explicit teaching of executive function strategies.     

Mapping the literature of health care chaplaincy

Objective:

This study examined citation patterns and indexing coverage from 2008 to 2010 to determine (1) the core literature of health care chaplaincy and (2) the resources providing optimum coverage for the literature.

Methods:

Citations from three source journals (2008–2010 inclusive) were collected and analyzed according to the protocol created for the Mapping the Literature of Allied Health Professions Project. An analysis of indexing coverage by five databases was conducted. A secondary analysis of self-citations by source journals was also conducted.

Results:

The 3 source journals—Chaplaincy Today, the Journal of Health Care Chaplaincy, and the Journal of Pastoral Care and Counseling—ranked as the top 3 journals in Zone 1 and provided the highest number of most frequently cited articles for health care chaplaincy. Additional journals that appeared in this highly productive zone covered the disciplines of medicine, psychology, nursing, and religion, which were also represented in the Zones 2 and 3 journals. None of the databases provided complete coverage for the core journals; however, MEDLINE provided the most comprehensive coverage for journals in Zones 1 and 2, followed by Academic Search Complete, CINAHL, PsycINFO, and ATLA. Self-citations for the source journals ranged from 9% to 16%.

Conclusions:

Health care chaplaincy draws from a diverse body of inter-professional literature. Libraries wishing to provide access to journal literature to support health care chaplaincy at their institutions will be best able to do this by subscribing to databases and journals that cover medical, psychological, nursing, and religion- or spirituality-focused disciplines.

Highlights

• Health care chaplaincy is a broadly inter-professional field that draws from and contributes to medical, nursing, psychological, and religion or spirituality literature.
• Two of the three source journals were sponsored by professional chaplaincy organizations.
• Journals and books were cited with almost equal frequency.

Implications

• For full coverage of the health care chaplaincy literature, librarians should consider searching in databases beyond MEDLINE, for example, CINAHL and Academic Search Complete, to assure comprehensive coverage.
• Health care chaplaincy researchers and educators considering publication will find the study useful for identifying relevant journals from related disciplines.