Kim Mooney-Doyle1, Maiara Rodrigues Dos Santos2, Regina Szylit2, Janet A Deatrick3. 1. University of Pennsylvania School of Nursing, Philadelphia, PA, United States. Electronic address: kemooney@nursing.upenn.edu. 2. University of Sao Paulo, School of Nursing, Sao Paulo, Brazil. 3. University of Pennsylvania School of Nursing, Philadelphia, PA, United States.
Abstract
PURPOSES: To explain parental expectations of support from healthcare providers for their parenting roles and goals during a child's life-threatening illness (LTI). DESIGN AND METHODS: Qualitative interpretive study guided by the Family Adjustment and Adaptation Response Model. Thematic analyses were conducted with data from 31 semi-structured interviews of parents of children with LTI using systematic strategies to ensure rigor including audit trails and prolonged engagement. RESULTS: We identified three themes and one meta-theme or overall theme: (1) "Help us survive this," (2) "Let's fight together: please fight with me, not against me, to care for my family," and (3) "Guide me through the darkness: I am suffering." Overall, the parents conveyed that they expect mutuality with the health care providers and system in order to keep Fighting together for my family survival. CONCLUSIONS: In the daily work of caring for their families, parents of children with LTI consider survival on multiple levels. They consider the life, illness, and potential death of one child while considering the on-going survival and sustenance of family relationships. PRACTICE IMPLICATIONS: Parents are distressed and grapple with conflicted feelings about managing competing needs of various family members. Relationships with health care providers can influence parents' management of the situation and be a source of support as their parenting role changes over the illness trajectory, time, and in response to adversity.
PURPOSES: To explain parental expectations of support from healthcare providers for their parenting roles and goals during a child's life-threatening illness (LTI). DESIGN AND METHODS: Qualitative interpretive study guided by the Family Adjustment and Adaptation Response Model. Thematic analyses were conducted with data from 31 semi-structured interviews of parents of children with LTI using systematic strategies to ensure rigor including audit trails and prolonged engagement. RESULTS: We identified three themes and one meta-theme or overall theme: (1) "Help us survive this," (2) "Let's fight together: please fight with me, not against me, to care for my family," and (3) "Guide me through the darkness: I am suffering." Overall, the parents conveyed that they expect mutuality with the health care providers and system in order to keep Fighting together for my family survival. CONCLUSIONS: In the daily work of caring for their families, parents of children with LTI consider survival on multiple levels. They consider the life, illness, and potential death of one child while considering the on-going survival and sustenance of family relationships. PRACTICE IMPLICATIONS: Parents are distressed and grapple with conflicted feelings about managing competing needs of various family members. Relationships with health care providers can influence parents' management of the situation and be a source of support as their parenting role changes over the illness trajectory, time, and in response to adversity.
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