title: Examining the Experiences of Fathers of Children with a Life-Limiting Illness.
abstract: Families who have a child diagnosed with a life-limiting illness (LLI) face substantial challenges resulting from the complexity and devastating impact of the condition and potential closeness of death. The experiences of fathers of a child with LLI have been understudied; therefore, this study explored the stresses, experiences, and strategies of these fathers, including their perceptions about support needs. Based on grounded theory, in-depth semi-structured interviews were conducted with 18 fathers of children with LLI. Six fathers had experienced the death of their child. The overarching themes were stresses, means of coping, and perceived needs for support. Generally, fathers in this study struggled relative to discursive and internalized notions of fathers as providers and protectors for their children, combined with an inability to ease their child's vulnerability to LLI. Participants were engaged in the care of their child with LLI, but several felt marginalized by health care providers in care planning and staff/family communication. Some fathers recognized and valued their support network while others had few supports. Some described personal growth and desired to help other fathers. Practice implications and recommendations include renewed application of family-centered care, overcoming presumptions about fathers' roles, and recognizing the impact of LLI beyond physical health.
authors.affiliation: a Faculty of Social Work, Central and Northern Alberta Region , University of Calgary , Edmonton , Alberta , Canada.
authors.forename: David B
authors.initials: DB
authors.lastname: Nicholas
authors.affiliation: b Department of Social Work , The Hospital for Sick Children , Toronto , Ontario , Canada.
authors.forename: Laura
authors.initials: L
authors.lastname: Beaune
authors.affiliation: c Department of Psychology , The Hospital for Sick Children , Toronto , Ontario , Canada.|d Institute of Medical Sciences, DLSPH and OISE , University of Toronto , Toronto , Ontario , Canada.
authors.forename: Maru
authors.initials: M
authors.lastname: Barrera
authors.affiliation: e The Hospital for Sick Children Family Advisory Network , Toronto , Ontario , Canada.
authors.forename: Jonathan
authors.initials: J
authors.lastname: Blumberg
authors.affiliation: f Stollery Children's Hospital , Edmonton , Alberta , Canada.|g Department of Pediatrics , University of Alberta , Edmonton , Alberta , Canada.
authors.forename: Mark
authors.initials: M
authors.lastname: Belletrutti
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D001294:Attitude to Health; D001601:Bereavement; D017028:Caregivers; D005220:Fathers / Q000523:psychology*; D006776:Hospitals, Pediatric; D006801:Humans; D007398:Interpersonal Relations; D007407:Interviews as Topic; D008297:Male; D012944:Social Support; D012959:Socioeconomic Factors; D013315:Stress, Psychological / Q000523:psychology*; D019452:Terminally Ill / Q000523:psychology*
keywords: Bereavement; caregivers/caregiving; children/pediatrics; health care; palliative care