Being we and being me: Exploring the needs of Austrian families with caring children

Abstract

Children and adolescents with caring responsibilities are an uncontested reality in our society. Most are hidden from public view, and they perform a broad range of caring activities for chronically ill or disabled family members. The research literature has accumulated a comprehensive body of knowledge about young carers' personal needs. However, knowledge and understanding are limited regarding the needs of young carers' families. This knowledge can contribute to preventing children and adolescents from assuming inappropriate caring roles. A qualitative research approach was used to investigate the needs of young carers' families in terms of managing daily caring demands. Nine family interviews were conducted with 34 individuals including 15 young carers during spring/summer 2015 in eastern Austria. Open and axial coding procedures and constant comparison method were used to analyse the data. The findings revealed that young carers' families need to live in accordance with their inherent family logic. Family logic is generated and maintained via (i) family reciprocity that involves the natural help within the family, (ii) individual developmental space that allows family members to be perceived and act as individuals and (iii) network cooperation that offers formal and informal support and recognition from society in general. The findings contribute to understanding how families with caring children manage the caring demands of their everyday lives. The findings also indicate that formal support for families with young carers should consider the individuality of caring arrangements with respect to the holistic and personal needs and avoid stigmatising families that integrate children into caring.

Towards a typology of negotiating care in families: a qualitative multiple perspectives study in Austria

“…It was surprising to see the openness with which the children and adolescents spoke about their help for another family member; yet, at the same time, they were often not aware of their caring roles. Even more so than for adults, supporting a family member arises from a feeling of family responsibility that young carers do not automatically associate with the concept of kinship care (Nagl-Cupal and Hauprich, 2018). Although it can be assumed that some 3-6 per cent of all minor children are involved in care, this fact is hardly taken into account in research on home-based care arrangements and is barely the subject of healthcare (Nagl-Cupal and Hauprich, 2020).…”

Psychosocial resources contributing to resilience in Austrian young carers—A study using photo novella

“…Young carers also need to be able to retreat and distance themselves from everyday strains and stresses, as well as those related to their caring responsibilities (Metzing & Schnepp, 2008; Moore et al, 2014; Nagl‐Cupal & Hauprich, 2018; Stamatopoulos, 2015). This need must not be mistaken for an expression of maladaptive coping or denial (Bonanno, 2004), but viewed as an indicator that resilience requires time for reflection and regeneration (Ungar et al, 2005).…”

“…By providing most of the care, the parents reduce their children's caring responsibilities, which may still be substantial (taking up to 3 h per day in this study). Parents try to maintain a balance between their children's caring responsibilities and being “normal kids” in an attempt to ensure that each family member's needs are met (McDonald et al, 2010; Nagl‐Cupal & Hauprich, 2018). Overcoming these challenges requires family cohesion, problem‐solving skills, and educational competencies within the family (De Jong & Schout, 2013; Schout et al, 2017), as well as strong family bonds facilitated by family routines, rituals, and shared time, in addition to recreation (Black & Lobo, 2008), all of which were frequently illustrated in this study.…”

Invisible population: Understanding recruitment barriers of a nurse‐led support programme for families with caregiving children in Austria

“…However, locally as well as internationally, the implementation of such an approach is an assumption rather than a rule (Berggren & Hanson, 2015). The most important aspect to consider for young carers' families to accept support from professionals is the retention of control over the nature and the extent of support, as well as the overall caring responsibility (Nagl‐Cupal & Hauprich, 2018). This, however, seems to contradict the rationale of the general homecare system represented by agencies and service providers and necessitates a general cultural change on the provision of formal care for families in the community.…”

“…To develop the programme, the following steps were worked out: 1. problem definition, 2. the accumulation of building blocks for designing the support programme, including (a) a literature review, (b) a problem and need analysis and (c) an analysis of the current practice (Van Meijel, Gamel, Van Swieten‐Duijfjes, & Grypdonck, 2004). Our basic assumption was that support for young carers and their families should contain an appropriate mix of formal and informal support where the nature, extent and overall responsibility are maintained by the family (Nagl‐Cupal & Hauprich, 2018) . We then identified the family group conference (FGC) as a promising strategy in nursing for meeting these requirements (De Jong, Schout, & Abma, 2014; Wright, 2008).…”