An Exploration of the Culture Care Experiences of Puerto Rican Families with a Child with Special Health Care Needs as Perceived by the Family Caregiver

Advances in medical care have resulted in rising numbers of children living with chronic illness. Nurses care for families with special needs during all aspects of their care from the office visit, the inpatient stay, and in the home. Therefore, nurses need to be highly skilled and sensitive to the families' cultural needs in order to assist with coping and the daily challenges they face. This study explored the culture care experiences of Puerto Rican families with a child with special health care needs as perceived by the family caregiver. This family member is the individual who has the greatest amount of interaction with the health care system and is most intimately involved in the care of the special health care needs child. Interviews with the family caregiver, using a self-developed semi-structured interview guide explored the culture care experiences of the family caregiver. The Culture Care Diversity and Universality Theory guided the study and Leininger's four phases of data collection and analysis was implemented. A sample of 16 general and 8 key informants were interviewed and data was organized and managed using NVIVO 10.0 software. The findings included the identification of 14 categories, and 5 patterns from which emerged the themes of: 1) The family caregiver describes the of burden of care, 2) the family caregiver perceives caring behaviors as attentiveness and respect, and 3) the family caregiver's feelings of responsibility for the child creates fear and uncertainty in their ability to meet the child's needs. The themes indicate that nurses must ensure the development of a trusting, respectful therapeutic relationship with the caregiver and the child in order to promote confidence in the caregiver as well as decrease stress and anxiety levels.

Name thesis:degree_name

PhD

Level thesis:degree_level

Immediate Access

Discipline thesis:degree_discipline

Nursing

Year dc:date.available

2015

Author dc:creator

• Rousseau, Karen S.

Contributors dc:contributor

• Richard Zoucha
• Lynn Simko
• Marilyn McFarland
• Roberta Rehm

• Children
• Chronic Illness
• Culture Care
• Ethnonursing
• Puerto Rican
• Special Care Needs

Language dc:language

English

Repository record dc:identifier

https://dsc.duq.edu/etd/1124

OAI identifier oai:identifier

oai:dsc.duq.edu:etd-2140