Paediatric respite care: a literature review from New Zealand

Abstract

This paper reviews relevant international and New Zealand literature, policy documents and reports on respite provision for children who are dying and their families. The literature describes why respite care for children is necessary, and evaluates present respite services in accord with recent reports and literature. The service provisions needed for dying children and their families are explored, including suggestions for the improvement of services and future research. The literature reveals that, although respite care for terminally ill children and their families is necessary, service provisions are uncoordinated, not always culturally sensitive and very limited for children and their families. Improvement in paediatric respite services is necessary and research needs to be conducted in this area to facilitate the development of more appropriate respite services for children and their families.

Income and Occupation as Correlates of Well-Being of Caregivers of Children with Disabilities in South-Western Nigeria

“…Financial pressure adds to stress, places constraints on the manner in which they can care for their child and severely limits participation in normal activities for other children in the family. There are additional expenses arising from medical appointments, transportation and parking and home modifications (Carpenter et, al., 2000;Horsburgh, 2002;Horsburgh & Trenholme, 2002).In addition, low income is a major source of stress for all caregivers. The more dependent the disabled child, the more support needed by a caregiver and level of income affects ability to purchase additional support.…”

“…Policymakers should consider potential strategies to provide better financial support to family caregivers (Lai & Leonenko, 2007). According to Carpenter, et al, (2000); Horsburgh (2002); Horsburgh and Trenholme (2002), disability has direct financial burden on informal caregivers. The informal caregivers bear huge financial liabilities over and above that of rearing of a normal child.…”

“…Financial pressure and the stress they encounter, severely hinder their participation in normal activities for other children in the family. Besides, there are other expenses coming from medical appointments, transportation and home modifications (Carpenter, Cooper, Fischl, Gatell, Gazzard and Hamme, 2000;Horsburgh, 2002;Horsburgh & Trenholme, 2002).Studies have revealed that the greater the socio-economic status (income and occupational) the less stress the caregiver may have and the more effective the care giving to the psychological well-being of physically challenged children (Baillie, Norbeck, & Barnes 1988;Chen & Greenberg, 2004;Thompson, Futterman, Gallagher-Thompson, Rose& Lovett,1993).…”

Les besoins d’apprentissage des bénévoles en contexte de soins palliatifs pédiatriques

“…Ces avancées, telles que la technique de ventilation, la transplantation d'organes, la technique d'hyperalimentation et les nouveaux traitements pharmacologiques, ont cependant entraîné dans leur sillage une complexification des soins ainsi qu'un alourdissement, pour les familles de ces enfants, des responsabilités relatives à leur prise en charge (Trottier, 2004). Ainsi, pour la plupart des familles ayant un enfant gravement malade, les tâches, les inquiétudes, les coûts financiers, la fatigue et l'isolement associés au maintien à domicile de cet enfant deviennent très lourds à supporter (Mongeau et al, 2004 ;Horsburgh et al, 2002 ;Liben et al, 2000 ;Davies et al, 1998b ;Kirk, 1998). Parmi les mesures de soutien pouvant leur permettre de mieux faire face aux nombreux défis que comporte leur vie quotidienne, l'offre de répit est primordiale (Davies et al, 2004 ;Mongeau et al, 2004 ;McCormack et al, 2000 ;Gravelle, 1997).…”

“…Parmi les mesures de soutien pouvant leur permettre de mieux faire face aux nombreux défis que comporte leur vie quotidienne, l'offre de répit est primordiale (Davies et al, 2004 ;Mongeau et al, 2004 ;McCormack et al, 2000 ;Gravelle, 1997). Le répit constitue d'ailleurs une composante essentielle des soins palliatifs pédia-triques (ACT et al, 2003 ;Horsburgh et al, 2002 ; American Academy of Pediatrics, 2000 ; Davies et al, 1998b). Il est possible pour des bénévoles de répondre à une partie des besoins de répit de ces familles lorsqu'ils sont soigneusement sélectionnés, formés et supervisés (ACSP et al, 2004 ;ACT et al, 2003 ;Horsburgh et al, 2002 ;Davies et al, 1998a).…”