‘It’s nothing you could ever prepare anyone for’: the experiences of young people and their families following parental stroke

Abstract

The research offers an insight into the processes that may contribute to patterns of interpersonal relating that could negatively impact on adjustment. Provision of adequate information, psychological and practical support during recovery may therefore be crucial elements of supporting young people and their families in adjusting to the challenges posed by stroke.

Effects of personal characteristics, disease uncertainty and knowledge on family caregivers' preparedness of stroke survivors: a cross‐sectional study

“…Uncertainty is a natural component of all illness experiences and can be seen throughout the phases of infirmity: diagnosis, treatment, prognosis, recovery, and potential recurrence. Previous studies have demonstrated that caregivers commonly have a strong sense of uncertainty about patients' disease because they cannot predict changes in patients' condition or their own daily life (Byun et al, 2017; Byun, Riegel, Sommers, Tkacs, & Evans, 2016; Coppock, Ferguson, Green, & Winter, 2018). Several studies have reported that family caregivers of stroke survivors in China and other countries lack knowledge about stroke warning symptoms (Krishnamurthi et al, 2019; Li et al, 2017).…”

The experience of close personal relationships after stroke: scoping review and thematic analysis of qualitative literature

“…Many spoke of their loss of their role as a parent (Beal & Millenbruch, 2015;Coppock et al, 2018;Kitzmuller et al, 2012;Edwards et al, 2014;Walker et al, 2020, Yilmaz et al, 2015 and a desire to feel like a parent again (Edwards et al, 2014). Parents frequently spoke of difficulties with disciplining children and a loss of parental authority and equality (Edwards et al, 2014;Walker et al, 2020).…”

“…One participant highlighted this, commenting 'they're going to look at one part of you and that's the damaged frail part, too frail maybe to have a relationship with' (Anderson & Whitfield, 2013, p. 824). For some, there was a perceived lack of empathy from spouses (Thompson & Ryan, 2009) and children (Coppock et al, 2018).…”

“…Not all relationships became problematic, however, with some reporting that their relationships with others were strengthened (Leahy, Desmond, Coughlan, O'Neill & Collins, 2016). Where negative changes were present, Lynch et al (2008) reported that these changes had a deep impact and that many participants described loss in the context of their premorbid relationships (Coppock, Ferguson, Green & Winter, 2018).…”

Families’ Experiences Living with Acquired Brain Injury: “Thinking Family”—A Nursing Pathway for Family-Centered Care

“…While the impact of ABI on individuals and families, and their corresponding sense of losses, has been well documented, generating knowledge and understanding of families' experiences of living with ABI has largely derived from examination of the subsystems within families-to either present their views of the family or provide their own perceptions of being in the family. Subsystems studied have included the individual with the ABI [1][2][3][4][5][6][7][8]; the caregiver or primary family carer [9][10][11][12][13][14][15][16][17][18], children [19][20][21][22][23], siblings [24][25][26][27][28], and the marital relationship [29][30][31][32][33][34][35][36]. Whilst the subsystem research has provided further understanding of individuals' experiences living with ABI, a family systems approach that studies the family in interaction with each other is limited.…”