The formal support experiences of mothers of adolescents with intellectual disabilities in Edinburgh, UK: a longitudinal qualitative design.
BACKGROUND
In the United Kingdom, healthcare provision for children with intellectual disabilities (ID) has shifted away from institutions to the community. Today, family members most often assume the primary caregiver role and look after care recipients in the home. The support needs of caregivers, therefore, represent an important area of research that should help caregivers enhance their quality of life.


OBJECTIVE
The aim of this study was to understand the received formal support perceptions of mothers of ID adolescents over time.


METHODS
This study used a longitudinal qualitative method in three phases. Semistructured interviews were conducted with seven mothers at three points in time (initial, at 6 months, and at 18 months). Constant comparative analysis was conducted on transcribed interviews.


RESULTS
The three themes that emerged from research included (1) the process of complex emotions, (2) the perception of received support, and (3) the process of fighting reactions. Mothers expressed different levels of satisfaction and dissatisfaction with the range of support received. Respite care was, overall, a beneficial intervention for participants. However, some mothers felt health professionals to be insensitive, showing lack of understanding and empathy, diminished personhood, and perceived lack of respect for the human value of their children with ID. The "fighting process" experienced when applying for financial help from the social welfare system was also pointed out as stressful. Further exploration of the professional support needs of mothers is important to support effectively their effective caregiving role.


CONCLUSIONS
Professionals should increase their awareness of caregiver sensitivities and be respectful of individual responses by providing empathy and understanding from the caregivers' point of view.
Lin
Mei-Chun
MC
Department of Nursing, Cardinal Tien College of Healthcare and Management, Taipei, Taiwan, ROC. meichun@ctcn.edu.tw
Macmillan
Maureen
M
Brown
Norrie
N
D000293:Adolescent; D000328:Adult; D005260:Female; D006801:Humans; D008607:Intellectual Disability / Q000451:nursing / Q000523:psychology*; D007407:Interviews as Topic; D008137:Longitudinal Studies; D008875:Middle Aged; D012944:Social Support; D006113:United Kingdom