TY - JOUR
T1 - Assisting a child with tuberous sclerosis complex (TSC): a qualitative deep analysis of parents' experience and caring needs
AU - Graffigna, Guendalina
AU - Bosio, C
AU - Cecchini, Isabella
PY - 2013
Y1 - 2013
N2 - OBJECTIVE:\r\nThis study was aimed to explore parents' experience of assisting children affected by tuberous sclerosis complex (TSC) with subependymal giant-cell astrocytoma (SEGA) manifestation, in order to understand their caring needs and expectation of support.\r\nSETTING AND PROCEDURE:\r\nThe study was designed according to the qualitative method of interpretative description and implied two sequential phases of data collection. The first phase was based on in-depth interviews with 18 Italian caregivers of children living with TSC. The second phase of the research was based on an online forum with 30 caregivers of children living with TSC.\r\nPARTICIPANTS:\r\n48 Italian caregivers, assisting patients with TSC with SEGA manifestation have been involved in the study.\r\nRESULTS:\r\nWhen a TSC diagnosis is made, the whole family is affected psychologically. TSC has a great impact on families' quality of life and on their ability to cope with the disease and support the child's ability to recover and reach an acceptable level of well-being. Caregivers report the experience of losing control and the feeling of loneliness and abandon from the healthcare system.\r\nCONCLUSION AND PRACTICE IMPLICATIONS:\r\nFamilies of children affected by TSC need targeted psychosocial assistance in order to support patients and caregivers and facilitate their social integration.
AB - OBJECTIVE:\r\nThis study was aimed to explore parents' experience of assisting children affected by tuberous sclerosis complex (TSC) with subependymal giant-cell astrocytoma (SEGA) manifestation, in order to understand their caring needs and expectation of support.\r\nSETTING AND PROCEDURE:\r\nThe study was designed according to the qualitative method of interpretative description and implied two sequential phases of data collection. The first phase was based on in-depth interviews with 18 Italian caregivers of children living with TSC. The second phase of the research was based on an online forum with 30 caregivers of children living with TSC.\r\nPARTICIPANTS:\r\n48 Italian caregivers, assisting patients with TSC with SEGA manifestation have been involved in the study.\r\nRESULTS:\r\nWhen a TSC diagnosis is made, the whole family is affected psychologically. TSC has a great impact on families' quality of life and on their ability to cope with the disease and support the child's ability to recover and reach an acceptable level of well-being. Caregivers report the experience of losing control and the feeling of loneliness and abandon from the healthcare system.\r\nCONCLUSION AND PRACTICE IMPLICATIONS:\r\nFamilies of children affected by TSC need targeted psychosocial assistance in order to support patients and caregivers and facilitate their social integration.
KW - QUALITATIVE RESEARCH
KW - tuberous sclerosis complex
KW - QUALITATIVE RESEARCH
KW - tuberous sclerosis complex
UR - https://publicatt.unicatt.it/handle/10807/55958
UR - https://www.scopus.com/inward/citedby.uri?partnerID=HzOxMe3b&scp=84892572033&origin=inward
UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=84892572033&origin=inward
U2 - 10.1136/bmjopen-2013-003707
DO - 10.1136/bmjopen-2013-003707
M3 - Article
SN - 2044-6055
VL - 3
SP - e003707-e003707
JO - BMJ Open
JF - BMJ Open
IS - 12
ER -