Experiences of Inner-City Fathers of Children With Chronic Illness

Abstract

We aim to explore the experiences of fathers from inner-city families caring for children affected by chronic health conditions or disabilities. A systematic scoping review was conducted using the Arskey and O'Malley framework. Fourteen of the 5114 articles were included in the full review and were qualitatively evaluated in terms of stressors, resources, perception, coping, and adaptation according to the Double ABCX model. Stressors included financial strain and health care access barriers. Resources ranging from immediate to extended family members depended on ethnicity. Fathers' perceptions of their primary caregiver roles depended on ethnicity in the context of cultural gender norms. While inner-city fathers desired information about their children's health, some were uncomfortable asking physicians. They had a higher risk for coping difficulties and maladaptation, including depression. We highlight a need for pediatricians to advocate for additional resources to provide comprehensive care for inner-city fathers caring for their children with chronic health conditions or disabilities.

Unmet Needs of Male Caregivers of Children and Youth with Special Health Care Needs

“…group therapy) and informal supports (e.g. mentoring, planned social experiences) possibly facilitating camaraderie among male caregivers of CYSHCN (Ainbinder et al, 1998;Feudtner, 2002;Kerstis et al, 2018;Kobylianskii et al, 2018;Nicholas et al, 2016;Solomon et al, 2001). Programs should consider potential barriers such as possible caregiver adherence to a 'strong man' identity, possibly mediating his openness to receiving emotional support from others (Baldwin et al, 2018;Tully et al, 2017).…”

“…(Cohen et al, 2011). These foregone parental physical and mental health needs suggest male caregivers are a specific group who could benefit from increased connection to supportive resources (Caicedo, 2014;Cené et al, 2016;Feudtner, 2002;Keller & Honig, 2004;Kobylianskii et al, 2018).…”

I Be Africa Man Original: Towards a Contextual Conceptualization of Father Involvement in the Education of Children with Disabilities in Kenya

“…Kenya has 44 ethnic groups [14] that have their own distinct mother tongues, cultures, beliefs and practices [15]. When it comes to parenting, the father's ethnicity influences the perception of the primary caregiving role in the context of cultural norms of gender [16]. Nevertheless, similarities in performing fatherhood are now present, due to socio-demographic factors and cultural practices like inter-ethnic marriages, formal employment, increased access to education as well as improved opportunities of trade [17].…”

Perceived mental health in parents of children with rare congenital surgical diseases: a double ABCX model considering gender

“…In the context of rare congenital surgical diseases, a crisis event (x) is the diagnosis of a rare disease and, as given in this study, the circumstances caused by the COVID-19 pandemic. In recent research on families of children with a chronic condition, different indicators have been used to operationalize the cumulative demands forming stressor pile-up (aA), among them scales assessing stressful life events of the family [ 15 ], life stress [ 16 ], disease severity, behavioral problems of the child [ 17 ], or single items such as parental educational attainment, marital status [ 18 ], and income [ 19 ]. Adaptive resources (bB) were assessed as social or family support and family functioning or family environment [ 16 , 18 , 20 ].…”

“…The operationalization of perception and coherence (cC) has also varied across studies, including self-reports of sense of coherence [ 20 ], spiritual wellbeing, and perceived parental/family stress [ 15 , 18 ]. Mental health, depression, and health-related quality of life [ 19 ] were used as adaptation indicators (xX).…”