On duty all the time: health and quality of life among immigrant parents caring for a child with complex health needs

• Published in: Journal of clinical nursing 2016-02, Vol.25 (3-4), p.362-371
• Main Authors: Kvarme, Lisbeth Gravdal, Albertini-Früh, Elena, Brekke, Idunn, Gardsjord, Ragnhild, Halvorsrud, Liv, Liden, Hilde
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Caregivers; Caregivers - psychology; caregiving; Child; Child Health Services; Child, Preschool; Children & youth; children with complex health needs; Critical Illness - nursing; Critical Illness - psychology; Emigrants and Immigrants; Female; Focus Groups; health; Humans; immigrant parent; Infant; Infant, Newborn; Male; Mental health; Middle Aged; Mothers; Nursing; Pakistan - ethnology; Parents & parenting; Parents - psychology; Poland; Quality of Life; Social Support; Young Adult
• ISSN: 0962-1067; 1365-2702
• DOI: 10.1111/jocn.13056

Aims and objectives To provide knowledge about how immigrant parents of children with complex health needs manage their family lives and how this affects their own health and quality of life. Background Caregivers of children with complex health needs have additional risk for general health problems and mental health problems and immigrant parents may be more vulnerable to mental distress and failing health and quality of life. Design This qualitative study used an exploratory design with individual and focus group interviews. Data collection and analysis followed phenomenological hermeneutic guidelines. Methods Individual and group interviews with 27 parents: 18 mothers and 9 fathers from Pakistan, Poland and Vietnam. Results Immigrant parents of children with complex health needs experience their own health and quality of life challenges. They described the burden of dealing with their child's needs and special care, which affects their sleep and physical and mental health. Single mothers are particularly vulnerable. Conclusion Parents reported positive and negative effects of their caregiving experience that may affect their health and quality of life. Mothers were the primary caregivers and reported more health problems than did fathers. The lack of respite care, social networks and support impacted maternal health. Immigrant parents struggle to access resources for their child with complex health needs. Relevance to clinical practice Hospital nurses, schools and community health care can play a valuable role in supporting the parents of children with complex health needs. It is important that parents are informed about their rights and receive a coordinator and interdisciplinary group to ensure that their needs are met with assistance and respite care. That maternal health was worse in this sample implies that health care professionals should pay more attention to reducing stress among these caregivers.