Abstract
Background: Adult palliative care patients and their family members experience significant emotional distress. To date research on the experience of distress in families has primarily focussed on the individual experience of patients or their family caregivers rather than examining the family system.
Aims: Using a multiple case study approach we present novel methods to understand the experience of emotional distress and help-seeking for distress in families.
Methods: 12 families were recruited in a cross-sectional study. Study design was informed by family systems theories. Cases were patients receiving palliative care, family member(s) and a healthcare professional involved in their care. Data sources included: individual semi-structured interviews (all participants, n=43); Family Relationships Index, Emotion Thermometers Tool ©, ecomaps and semi-structured dyadic or triadic family interviews (patient and one or two family members).Within case and cross case analysis used a modified constant comparative method.
Results: Within case analysis provided nuanced understanding of individual and shared ‘private’ distress within the family system and ‘public’ distress discernible to healthcare professionals. Complex interplay of family scripts, relational functioning and communication practices were visible. Triadic family interviews (n=8) enriched analysis in three ways. First, triadic interviews enabled exploration of family experience beyond the dyadic spousal subsystem. Second, circular interviewing during triadic interviews facilitated dynamic exploration of both congruence and differences in perspectives within families. Finally, close attention to the use of language and discourse during analysis of triadic family interviews enhanced insight into how families co-constructed the meaning of distress, communicated distress, and the influences on help-seeking for distress.
Aims: Using a multiple case study approach we present novel methods to understand the experience of emotional distress and help-seeking for distress in families.
Methods: 12 families were recruited in a cross-sectional study. Study design was informed by family systems theories. Cases were patients receiving palliative care, family member(s) and a healthcare professional involved in their care. Data sources included: individual semi-structured interviews (all participants, n=43); Family Relationships Index, Emotion Thermometers Tool ©, ecomaps and semi-structured dyadic or triadic family interviews (patient and one or two family members).Within case and cross case analysis used a modified constant comparative method.
Results: Within case analysis provided nuanced understanding of individual and shared ‘private’ distress within the family system and ‘public’ distress discernible to healthcare professionals. Complex interplay of family scripts, relational functioning and communication practices were visible. Triadic family interviews (n=8) enriched analysis in three ways. First, triadic interviews enabled exploration of family experience beyond the dyadic spousal subsystem. Second, circular interviewing during triadic interviews facilitated dynamic exploration of both congruence and differences in perspectives within families. Finally, close attention to the use of language and discourse during analysis of triadic family interviews enhanced insight into how families co-constructed the meaning of distress, communicated distress, and the influences on help-seeking for distress.
Original language | English |
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Pages (from-to) | S10-S11 |
Number of pages | 1 |
Journal | Palliative Medicine |
Volume | 30 |
DOIs | |
Publication status | Published - 6 Mar 2016 |