“I hope I’ll outlive him”: A qualitative study of parents’ concerns about being outlived by their child with profound intellectual and multiple disabilities

Abstract

Background: The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing and parents express concerns about being possibly outlived by their child with PIMD. However, little is known about the nature of these concerns. Method: We interviewed 27 parents of persons with PIMD and analysed the data thematically, to explore parents' concerns about being outlived by their child. Results: Most parents hoped to outlive their child with PIMD and related this to the expectation of a decreased quality of life (QoL) of their child, when they would have passed away. The uncertainty about who would fulfil their parental roles in the future contributed to parents' concerns and sometimes resulted in feelings of despair. Conclusions: Our study provides insight into the nature and gravity of parents' concerns. The division of parents' concerns into roles helps to address future care and support gaps for people with PIMD.

Experiences of mothers of children with profound intellectual and multiple disabilities in the Czech Republic

“…There are also different sources of worries and uncertainty. Parents are concerned for being possibly outlived by their child (Kruithof et al, 2021), however worries about the child probably inhibit mothers' worries about themselves and their future. There is a threat of staying alone and helpless, mainly for mothers without partners and other children, who abandoned their careers and much else to be able to raise their child.…”

Perspectivas familiares sobre la vivencia paternofilial de la discapacidad intelectual: una mirada fenomenológica

“…Las preocupaciones más significativas expresadas radicaron en la imposibilidad de estimar una predicción real sobre el futuro grado de autonomía y nivel de independencia para realizar los quehaceres cotidianos alcanzado por sus hijos durante su vida adulta o el pronóstico de la calidad de las redes de apoyo de las que estos podrán disponer en su vida futura. Todo ello se acompañó de un pensamiento constante y generalizado sobre la expectativa de no llegar a sobrevivir a su hijo con discapacidad, idea estrechamente vinculada a un posible descenso de la calidad de vida de sus hijos cuando ellos hayan fallecido (Brennan et al, 2017;Kruithof et al, 2021). No obstante, la máxima que todos y cada uno de los padres compartieron de forma unánime fue el deseo de cumplir la expectativa de que sus hijos fueran, por encima de todo, personas felices que tuvieran una vida digna.…”

Siblings' and parents' outlook for the prospective care for a family member with PIMD

“…The research conducted in Poland and elsewhere so far confirms that siblings are often expected to assume the role of primary caregivers in due course, becoming key figures in the lives of their brothers and sisters with disabilities, while embracing the responsibilities of a legal guardian and providing financial support (Bigby 1996(Bigby , 1997Freedman et al, 1997;Greenberg et al, 1999;Krause et al, 2010;_ Zyta, 2004). Relying on research performed to date, siblings are not only expected to play a guardian role; rather, there are findings demonstrating that they are, indeed, able to act in various vital life capacities for their brother and sister with a disability as far as care and support are concerned (Hall & Rossetti, 2018;Kruithof et al, 2022;Lashewicz, 2018;Lindahl et al, 2019). This readiness predominantly originates with these siblings' realization that they may one day, when their parents are no longer physically fit or are no longer alive, take full responsibility for their brother or sister and assume the duties once met by their parents (Griffiths & Unger, 1994;Heller & Kramer, 2009).…”