Healthcare distress, needs and expectations for genetic health team: Perceptions of family caregivers in caring children with Russell-Silver syndrome and idiopathic short stature

• Main Authors: Hsin-Ju Weng, 翁杏如
• Other Authors: Fu-Jin Shih
• Format: Others
• Language: zh-TW
• Published: 2008
• Online Access: http://ndltd.ncl.edu.tw/handle/15185539698207993451

碩士 === 國立陽明大學 === 臨床暨社區護理研究所 === 96 === Background. Taiwan’s children with Russell-Silver syndrome (RSS) and idiopathic short stature (CISS) as well as their family-caregivers (FCs) are often not complaint to health professionals’ suggestions for systematical medical follow-up. As such, RSS and CISS and their FCs suffer from complex developmental and family crisis. However, little has been known about their particular health needs. Purposes. The purposes of this project were to explore the RSS’s and CISS’s FCs’ perspectives of (a) difficulties and health needs of RSS and CISS, and (b) their caring distress, needs and expectations for health professionals. Method. A qualitative exploratory study was used. A purposive sampling of RSS’s and CISS’s FCs was invited from two leading medical center in the northern Taiwan. Data were collected by face-to-face in-depth interviews, and analyzed by qualitative content analysis method. Result. Ten informants taking care of equal sex of RSS and CISS participated in this project. The RSS and CISS were aged from 2 to 11 (M + SD = 6.90 + 2.69) years old. The initial diagnosis of RSS and CISS were made at age from 0 to 9 (M + SD = 2.60 + 3.00) years old. The informants were aged from 30 to 57 (M + SD = 38.50 + 7.12) years old. Eighty percent of them (n = 8) were mother, one was father and another was grandmother. Half of them received college education. Sixty percent of them reported with a religious affiliation of Buddhism or Taoism. Primary source of support for the informants were spouse (80%), and others including their parents and health professionals. The informants reported that impacts of RSS and CISS on their life were multidimensional, and psycho-social aspect in particular. Their psychosocial stress include (a) discrimination of the image of short stature; (b) deprive in learning opportunity and normal psychological development; (c) threat to body image; and (d) fear of needle injections. Primary physical impact was the inconvenience of daily life due to short stature. The informants’ coping strategies were establishing positive social interactions with others, and safe school environment to avoid potential harm to RSS and CISS. The distress in caring for RSS and CISS were: (a) endless psychological worries; (b) enduring the stress from child-rearing responsibilities; (c) negative emotions of having a sick child; and (d) dilemma of applying western or Chinese traditional medicine modes. Primary sources of the informants’ healthcare distress are: (a) difficult accessibility to growth hormone; (b) the lengthy process in confirming medical diagnosis; (c) the stigma of RSS and CISS and being as their FCs; (d) lack of adequate family support; and (e) lack of needed disease and treatment knowledge. The impacts of the informants’ distress are: (a) adjustment efforts in modifying family roles; (b) negative responses to society’s concerns; and (c) intense physical and mental caring burdens. The informants helped themselves by (a) practicing positive attitudes of self-adjustment; (b) actively seeking for medical resources and mental support; and (c) learning to grow from caring experience. They expected genetic health professionals to (a) provide medical and social resources; (b) provide good medical services; and (c) facilitate growth of supporting groups. Conclusion. The findings of this project will empower genetic health professionals to understand healthcare distress, needs and expected for RSS and CISS and their FCs. The existing care plans are suggested to be strengthened and the identified supporting resources can be introduced to them. Meanwhile, health professionals are suggested to help RSS, CISS and their FCs better cope with the health needs and maintain positive dynamic family interactions with societies across their developmental process.