Family Management Style Framework and Its Use With Families Who Have a Child Undergoing Palliative Care at Home

Abstract

Palliative care settings in many countries acknowledge families as their prime focus of care, but in Brazil, to date, researchers have devoted scant attention to that practice setting. In this article, we report the findings of a study that explored how families define and manage their lives when they have a child or adolescent undergoing palliative care at home. Data included individual semistructured interviews with 14 family members of 11 different families. Interviews were transcribed and the coding procedure featured qualitative content analysis methods. The deductive coding was based on the major components of the Family Management Style Framework and the eight dimensions comprising these components. The analysis provides insight into families' daily practices and problems inherent in managing their everyday lives that are encountered when they have a child in palliative care. The article features discussion of implications for the palliative care related development of family nursing practice.

Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review

“…Manuscripts represented data from nine countries: Australia, 24,26,31,36 Brazil, 12 Canada, 2,23,37,38,43,66 Germany, 32,40 Lebanon, 18 Netherlands, 44 Sweden, 33,39 United Kingdom, 17 the United States, 13–16,19,20,22,25,28,29,45 and one multi-country paper. 41 The primary study subject included pediatric ages, 42 the adolescent young adult (AYA) population ages 10–21, 22 14–21, 34 16–28, 19,28 and 15–25 years; 66 caregivers of patients receiving palliative care; 3,12,13,15,24,29,37,38,43,81 bereaved parents; 2,14,18,20,23,25–27,31–33,35,36,39,40,44,45 social workers; 16 principal investigators; 41 palliative team members; 17 and pediatric oncologists. 30 Five original research studies reported on a specific intervention other than the development of a palliative care service: use of family-centered ACP training, 34 parental decision rationale reported in timely summary for medical teams, 15 introduction of co-case management and shared decision-making education, 29 a 24-hour available palliative telephone service, 24 and advanced practice palliative staff training for transitions from critical care settings.…”

“…Mutual care was defined by the study team as the realization that the ill child and parent experience similar concerns for each other including the desire to protect each other from sad realities and negative emotions and outcomes which could contribute to not openly addressing worries, and a similar intention to look out for or advocate for each other. Parents spoke of struggling by the child’s side as the child struggles 12,81 and staying strong for the child while finding strength in the child. 12 Patients expressed worry about family members left behind 57 as parents expressed worry about leaving child alone.…”

“…Parents spoke of struggling by the child’s side as the child struggles 12,81 and staying strong for the child while finding strength in the child. 12 Patients expressed worry about family members left behind 57 as parents expressed worry about leaving child alone. 12 Patients spoke of protecting their parents while their parents protect them.…”

“…12 Patients expressed worry about family members left behind 57 as parents expressed worry about leaving child alone. 12 Patients spoke of protecting their parents while their parents protect them. 57 Patients spoke of carrying the “secrecy” of death and prognosis as part of protecting a silent family.…”

“…46,12,14,81,82 Whether through humor 61 or interactive play, 46 child and parent appreciated moments of memory making. Although experienced in different ways, fear was voiced across all stakeholder groups, 12,57,82 as was the theme of carrying blame and perception of death as a self-failure.…”