Parent-led strategies supporting personal well-being when caring for a child with a life-limiting condition: A scoping review

Abstract

The objectives of this review were to identify strategies initiated by parents of children with life-limiting conditions to support their own well-being at home and to describe the impact of these strategies on parental well-being. A systematic scoping review was performed using PRISMA-ScR guidelines, identifying 15 relevant studies that fit the inclusion and exclusion criteria. There were no studies that specifically assessed how parents support their own well-being; however, the 15 identified studies did provide pertinent data secondary to the primary aims of each study. This resulted in the identification of 14 parent-initiated strategies which were grouped thematically into 4 categories: (i) social experience and peer support, (ii) information and management techniques, (iii) reframed perspectives and (iv) prioritising own needs. Overall, there was some evidence of parents initiating specific, individualised and useful strategies to supporting their well-being. Notably lacking was any empirical evaluation as to the effectiveness of these strategies and the wider factors associated with them. Further research is required to assess how parents support their personal well-being in daily life and how these strategies can be implemented alongside service-initiated support to ensure full parental well-being.

‘Managing an unexpected life - a caregiver’s career’: Parents’ experience of caring for their child with a non-malignant life-limiting condition

“…Previous research has largely focused on parental stress and coping (Darlington et al, 2018; Oakley et al, 2021; Senger et al, 2016). Studies internationally have mainly focused on the perception of services (Noyes et al, 2018; Parravicini et al, 2018).…”

Health-illness transition processes in children with complex chronic conditions and their parents: a scoping review

“…From a more personal perspective, hope, optimism, spirituality and trust in children's potential for independence are factors that help children overcome these experiences [ 53 , 63 , 64 , 69 – 71 , 74 – 76 , 79 , 82 , 87 , 93 , 96 , 105 , 110 – 113 ]. At the same time, valuing parents' mental health is seen as a resource to alleviate the potential burden that can fall on them [ 50 , 65 , 112 ].…”

“…At the same time, valuing parents' mental health is seen as a resource to alleviate the potential burden that can fall on them [ 50 , 65 , 112 ]. Social and family support also appears to be positive, particularly if there are siblings in the family and if there are opportunities to join formal or informal mutual support networks [ 50 , 53 , 54 , 59 , 74 , 76 , 82 , 85 , 87 , 96 , 100 , 103 , 105 , 106 , 112 , 114 – 118 ].…”

Scoping Reviews in der Palliativforschung

“…Der Beitrag stellt die Anwendungsmöglichkeiten und Herausforderungen von Scoping Reviews in der palliativmedizinischen Forschung dar und zeigt praktische Lösungen in der Umsetzung. [10]. In der Palliativforschung erfolgt die Verschlagwortung meist mit sehr breit definierten Begriffen, wie beispielsweise dem Suchbegriff "end of life", der sich in der Literatur teils auf die letzten Lebensjahrzehnte bezieht.…”

“…Die Verwendung geeigneter und nach Möglichkeit im Rahmen des Scoping Reviews pilotierter Vorlagen dient der Nachvollziehbarkeit und Transparenz. Diese Vorlagen sollten Optionen bieten, die Ein- und Ausschlusskriterien – anhand derer die Relevanz der Literatur für die Fragestellung eingeschätzt wird (Schritt 3) – zu dokumentieren und später zu berichten, wie beispielsweise durch Oakley et al (2021) tabellarisch dargestellt 10 . In der Palliativforschung erfolgt die Verschlagwortung meist mit sehr breit definierten Begriffen, wie beispielsweise dem Suchbegriff „end of life“, der sich in der Literatur teils auf die letzten Lebensjahrzehnte bezieht.…”