'Can we fix it?!': understanding the impact of children’s hospice short breaks on parental relationships of life-limited and life-threatened children and young people.

Abstract

This thesis describes a PhD study which explored the impact of short breaks provided by children’s hospices on the partner relationship between parents. The specific objectives of the study were to: (1) explore parents’ perceptions of parenting life-limited/ threatened children or young people on their relationships, (2) determine if frequent short breaks enhance relationship satisfaction between parental figures compared to those who receive short breaks less frequently or not at all, (3) identify effects on relationships of parents receiving home and hospice-based short breaks compared to those receiving hospice-based short breaks only or home-based care only, and (4) identify societal factors influencing romantic relationships between parents of families receiving short breaks. A two phase exploratory sequential mixed methods design was used. In the first phase fifteen parental figures accessing a children’s hospice were interviewed. Three main themes were identified, reflecting parents’ perceptions of short breaks on their relationship with their partners: (1) ‘Every family is different’, (2) ‘Short break significance’ and (3) ‘Short break quality’. The theme ‘Every family is different’ encompassed three sub-themes: (i) ‘Alternative short breaks’; (ii) ‘Pressure and conflict between parental figures’ and (iii) ‘Together but separate’. ‘Short break significance’ comprised (i) ‘Significance to relationship’ and (ii) ‘Children before relationship’. ‘Short break quality’ encompassed: (i) ‘Building trust’ and (ii) ‘Getting a real break’. The second phase, an online survey, further explored interview themes. Participating children’s hospices distributed the survey to parents currently accessing short breaks. Results suggested hospice short breaks positively impacted relationship satisfaction and also supported interview themes. Integration of findings from both phases revealed the impact of children’s hospice short breaks on parental relationships is mediated by both external and internal influences. External influences are represented by a modified ABCX model of adjustment and adaptation (McCubbin and Patterson 1983) and the theme ‘Every family is different’. Families differ externally in terms of contributory stressors and protective resources. Couples with high contributing stressors and low protective resources benefit from short breaks, whilst those with low contributing factors and high protective resources benefit less. The theme of ‘Short break quality’ represented internal influences, comprising ‘Building trust’ and ‘Getting a real break’. Building trust was strongly linked to frequency of short breaks and hospice staff knowing the child or young person. The theme ‘Getting a real break’ was linked to short break location. If short break quality was perceived to be poor, perceived impact on relationships between parents was lessened. This study has significant implications for how short breaks are delivered by children’s hospices, specifically the importance of recognising individual family differences, tailoring short breaks to meet these differing needs and building trust between parents and hospice staff.