Families' needs when a child is long‐term ill: A literature review with reference to nursing research

Abstract

The analysis entailed a series of comparisons across articles focusing on major areas of inquiry and patterns of results. Various levels of needs are described, based on individual, family, and social needs.

A multi-disciplinary education process related to the discharging of children from hospital when the child has been diagnosed with type 1 diabetes - a qualitative study

“…Such motivation and enthusiasm brought about by the education programme encourages families to acquire further knowledge and skills, and is a method for creating better adherence to therapy [30] as well as improving the biomedical outcome [31]. The families are considered as being active members in the diabetic care team as is recommended in paediatrics [14,32,33,27] and are not given time to overcome the shock of the diagnosis before the items on the checklist are presented and the training begins. This is in line with Mol's [16] philosophy where she states that a family whose child has been diagnosed with type 1 diabetes do not feel good if they are overwhelmed with misery, instead it is better that the professionals put emphasize on that there are good treatments for diabetes these days (p 43), which is contrary to what is otherwise recommended when facing a crisis [32,33,14].…”

“…The families are considered as being active members in the diabetic care team as is recommended in paediatrics [14,32,33,27] and are not given time to overcome the shock of the diagnosis before the items on the checklist are presented and the training begins. This is in line with Mol's [16] philosophy where she states that a family whose child has been diagnosed with type 1 diabetes do not feel good if they are overwhelmed with misery, instead it is better that the professionals put emphasize on that there are good treatments for diabetes these days (p 43), which is contrary to what is otherwise recommended when facing a crisis [32,33,14]. It is the PDSN who takes care of the families' uncomplicated crisis, which is also shown by others [34].…”

“…In paediatrics it is often said that parents' involvement varies from poor to active participation [38] but decision-making should involve the child the parents and one or more of the professional health care staff [32,33] and always with the child's best interest in focus [29]. It is suggested that further research be made to find out if it is common that parents of children newly diagnosed with type 1 diabetes are more motivated to care for their child, independent of inpatient or outpatient care.…”

Relationship between catastrophic health expenditures and household incomes and expenditure patterns in South Korea

“…It was expected that changes in household income composition and expenditure patterns after health shocks may be different in urban areas of high-or middle-income countries. In such countries, social safety nets and a formal loan system may be well formed, but households may still have difficulty adjusting to a labor supply change and maintaining their earned income [8,20]. A qualitative study of Canadian parents whose children suffered from a life-threatening illness focused that productivity loss of parents and hidden costs which were not covered by financial support in Canada.…”

International Adaptation: Psychosocial and Parenting Experiences of Caregivers Who Travel to the United States to Obtain Acute Medical Care for Their Seriously Ill Child

“…Caring for a child with a serious or chronic illness can be a distressing experience for a parent both in and out of the hospital setting (Christian, 2010; Hallstrom & Elander, 2007; Kratz, Uding, Trahms, Villareale, & Kieckhefer, 2009; Rivero-Vergne, Berrios, & Romero, 2008; Shields, 2001). Often parents must restructure their lives and priorities in order to manage their child’s disease as well as the emotional well-being of other family members (Kratz et al, 2009).…”