Dying concerns in young parents with advanced cancer (PWAC): A scoping review

Abstract

Background Advanced cancer in young parents (PWAC) can increase dying concerns, the fluctuating thoughts, or feelings, conscious, or unconscious, about an approaching death by a person facing a terminal illness or a family member coping with the impending death of a loved one. However, limited research has been conducted to identify dying concerns in an ill parent as the research has focused on older adults. Objective Our goal was to identify dying concerns that PWAC are expressing and to understand how these concerns affect measurable outcomes. Method CINHAL, MEDLINE, PsychARTICLES, PsycINFO, Social Work Abstracts, Health Source: Nursing/Academic Edition, and Psychology and Behavioral Sciences Collection were searched. Articles included were samples of PWAC, peer-reviewed, and published within the last 10 years. Elderly or pediatric populations, PWAC with adult children, and early-stage cancer were excluded. The initial search resulted in 1,526 articles, 18 were identified as potentially relevant. Fourteen articles were identified and reviewed. Results PWAC expressed concerns for their children (n = 11), concerns for their co-parent (n = 4), and personal concerns (n = 11). Additionally, PWAC have decreased quality of life, have significant emotional and psychological distress, and have increased family dysfunction in relation to their concerns. Samples limit the generalizability of the findings. Majority of the articles consisted of White, upper, middle-class (n = 8) women (n = 7) diagnosed with breast cancer (n = 11) within nuclear families (n = 11). Significance of results Dying concerns are described in the literature from a fairly narrow sample of PWAC. Future research should focus on recruiting participants from diverse backgrounds, genders, diagnosis types, and non-nuclear families. Identifying concerns for the co-parent would also add to the understanding of dying concerns.

Family Cohesiveness: A Dying Concern for the Coparent in Families With Parents With Advanced Cancer With Dependent Children

“…In recent studies, PWACs of dependent children had concerns for their coparent that included concerns such as coping abilities and living as a single parent; the ability to emotionally and practically support all family members, including themselves; and concerns for the quality of parenting the children would receive in the event of their death. 6,[10][11][12][13][14] The most commonly used tool to measure concerns for the coparent from the ill parent's perspective was the Parental Concern Questionnaire (PCQ). 6,[10][11][12][13][14] The PCQ measures parenting concerns in patients with any stage of cancer who have dependent children on a 5-point ordinal scale and has 3 subscales measuring concerns about the emotional and practical impact of the illness on children and concerns about the coparent.…”

“…6 Dying concerns are defined as fluctuating thoughts or feelings that are conscious or unconscious about an accepted and approaching death that stem from a terminal diagnosis by the person facing the terminal illness or by a family member coping with the impending death of a loved one. [6][7][8][9] Extant literature has focused on the concerns of parenting while experiencing a terminal illness and the challenges the parents face, as well as the impact of advanced cancer on the children. 6 While the research lacks a comprehensive definition of dying concerns, a recent scoping review 6 found that dying concerns include the concerns of parents with advanced cancer (PWACs) for their children, concerns for their coparent, and personal concerns.…”

“…[6][7][8][9] Extant literature has focused on the concerns of parenting while experiencing a terminal illness and the challenges the parents face, as well as the impact of advanced cancer on the children. 6 While the research lacks a comprehensive definition of dying concerns, a recent scoping review 6 found that dying concerns include the concerns of parents with advanced cancer (PWACs) for their children, concerns for their coparent, and personal concerns. In addition, PWACs had decreased quality of life, had significant emotional and psychological distress, and had an increase in family dysfunction in relation to their concerns.…”

“…6,[10][11][12][13][14] The most commonly used tool to measure concerns for the coparent from the ill parent's perspective was the Parental Concern Questionnaire (PCQ). 6,[10][11][12][13][14] The PCQ measures parenting concerns in patients with any stage of cancer who have dependent children on a 5-point ordinal scale and has 3 subscales measuring concerns about the emotional and practical impact of the illness on children and concerns about the coparent. 14 The PCQ has good internal consistency, face validity, and reliability with a Cronbach's α of .83.…”

“…14 The PCQ has good internal consistency, face validity, and reliability with a Cronbach's α of .83. 11 The parental concerns for the children are well understood in the literature [5][6][7][8][9][10][11][12][13][14][15][16][17][18][19][20] ; however, the gap lies in understanding the PWACs' concerns for the coparents. The PCQ allows researchers to identify the severity of concerns for their coparent; however, the gap in the research is understanding what the specific concerns are.…”