How do immigrant parents of children with complex health needs manage to cope in their daily lives?

Abstract

Daily life with children who have complex health needs can be stressful for parents.Immigrant parents are vulnerable to stress because they may lack language skills and knowledge about the health care system, and have limited social networks. In this study, we focus on how immigrant parents of children with complex health needs use emotion-focused and problem-focused coping strategies to manage their daily life, and how their self-efficacy and the immigration process may affect their coping. This qualitative study had an exploratory design with individual and focus group interviews. The sample comprised 27 parents-18 mothers and nine fathers-from Pakistan, Poland and Vietnam. The findings indicated that the parents' love for their child helps them to cope in their daily life. Newly arrived migrants, single mothers with a severely ill child who lacked support and migrant parents with language difficulties struggle to cope. Some of the stress is related to personal, social and structural problems, and to the insufficient resources available to meet the child's needs. The parents used both emotion-focused and problem-focused coping strategies. The parents noted that access to both universal and selective welfare services is an important factor that contributed to their self-efficacy and coping.

A systematic review exploring palliative care for families who are forced migrants

“…Healthcare services were criticized by families and professionals for their limited scope, poor availability and accessibility, and often‐dispersed nature (Burnes et al., 2008; Gulati et al., 2012; Khanlou et al., 2015; Kvarme et al., 2016, 2017; Pinheiro & Jaff, 2018). Rigidity and complexity of the system (Brassart et al., 2017; Gulati et al., 2012) were linked to parents' limited understanding of what was available (Fellin et al., 2013; Kvarme et al., 2016) and a lack of knowledge about their child's condition (Beatson, 2013; Burnes et al., 2008).…”

“…In terms of physical ill health, parents discuss pain, sleep disturbance, stress, and tension (Contro et al., 2010; Kvarme et al., 2016, 2017; Wolff et al., 2011). Further burdens included a lack of leisure time, marital, and family conflict (Kvarme et al., 2016; Wolff et al., 2010), the unmet needs of siblings (Kvarme et al., 2016; Wolff et al., 2010) and for Mexican parents, a fear of not seeing other children who are left behind with relatives (Contro et al., 2010).…”

“…Coping strategies were undermined by a lack of tangible support including child care, respite services, and psychosocial support (Burnes et al., 2008; Khanlou et al., 2015; Kvarme et al., 2016). Families noted the absence of traditional support from partners, family, priests, and welfare services and struggled without these ‘invaluable’ support systems (Contro et al., 2010; Khanlou et al., 2015; Kvarme et al., 2017; Wolff et al., 2010). Coping strategies for families included love for the child which kept families going and the use of emotion‐focused coping (mostly mothers) and problem‐focused coping mechanisms (mostly fathers; Kvarme et al., 2017).…”

“…From the 18 studies, 20 articles were produced because two authors – Kvarme et al. (2016), Kvarme, Alebertini Früh, & Lidèn (2017), and Wolff, Pak, Meeske, Worden, & Katz (2010), Wolff, Pak, Meeske, Worden, & Katz (2011) – used the same data set to publish two separate articles with differing findings.…”

Key constituents for integration of care for children assisted with long-term home ventilation: a European study

“…There is evidence in wider literature on the care of children with CCNs that there are numerous and varied characteristics of a family that need to be understood to support family preparedness for discharge to home that goes well beyond clinical readiness to care. This includes issues relating to language, culture, race and ethnicity [24][25][26], family structures and support systems [27][28][29] and capacity for coping [30][31][32]. The fact that the majority of countries do not currently collect data on the experience of care from the perspective of the parents/guardians or siblings of children assisted with LTV, suggests a persistent paternalistic health service with a limited appetite for identifying and addressing the real needs of the child and family.…”