Chair: Kathy Kortes-Miller
a. How a structured health diary can improve symptom management and communication
Background: Palliative care aims to care for the whole person by helping to manage physical, emotional, social and spiritual needs. By doing this it aims to acknowledge each person’s uniqueness. For this to truly exist the patients voice needs to be heard and respected.
Aims/Purpose: To explore if the practice of palliative care patients keeping a structured health diary can improve their symptom management. This study examined if this practice can increase patient’s symptom and disease insight leading to improved symptom and intervention management and improve communication between patients and health professionals.
Design/Method: A qualitative approach was used with evaluation methodology. Six palliative care patients kept a structured health diary for six weeks. They shared the diary with all health professionals involved in their care. Once the six-week period had ended all patients took part in a face to face semi-structured interview. Nine health professionals who had had contact with the patient’s participants were contacted and took part in a face to face semi-structured interview.
Narrative thematic analysis took place and themes which linked participants experiences were identified.
Results/Findings: Seven themes were identified, 1. Supports awareness and understanding of symptoms and disease, 2. Increased awareness of holistic care, 3. Improves identification and accuracy of symptom reporting, 4. Supports autonomous care, 5. Improves family’s insight into patient’s illness and symptoms, 6. Improves continuity of care, 7. Improves quality of interactions between patient and health professionals.
Conclusions and Application to PHPC: There is limited research on the use of structured diaries in palliative care. This is the first study in New Zealand. The positive results show that structured diary use has a strong place in palliative care globally. These research findings also show that diary use fits well into the compassionate communities’ model of a public health approach to palliative care.
b. Family carers’ behaviours and related determinants regarding palliative care initiation: A qualitative interview study with family carers
Title: Family carers’ behaviours and related determinants regarding palliative care initiation: a qualitative interview study with family carers
Background. Most research on initiation of palliative care focuses on health care services and professional carers. However, also family carers can play a role in initiating palliative care for seriously ill persons with whom they have close relationships.
Aim. To identify behaviours of family carers regarding the initiation of palliative care for their seriously ill person and the determinants of these behaviours.
Methods. A qualitative study using semi-structured face to face interviews with 16 family carers of deceased persons who received palliative care was conducted. Thematic content analysis was used to identify groups of behaviours that influenced palliative care initiation and related determinants. The behavioural determinants were fitted in concepts of behavioural theories (eg ‘attitude’ of the Theory of Planned Behaviour). A behavioural model was developed.
Results. Most reported behaviours regarding palliative care initiation were related to communicating with the seriously ill person, other family members and professional carers; seeking for information and supporting the seriously ill person with processing information from professional carers; and organizing and coordinating care. Determinants both facilitating and hindering these behaviours included awareness (eg of poor health); knowledge (eg about palliative care); attitude (eg negative connotation of palliative care); social influence (eg important others’ opinion about palliative care) etc..
Conclusion. This study identified relevant family carers’ behaviours and related determinants such as attitude and knowledge that can contribute to palliative care initiation. As these determinants are modifiable, the palliative care behavioural model that resulted from this study can serve as a basis for behavioral interventions to promote timely palliative care initiation.
c. Seldom heard voices
Research Question: What are the understandings and experiences of people at end of life and their families of a Compassionate Community approach?
Methodology: A qualitative multi-site case study examined three contrasting examples of the development of Compassionate Communities approach to end of life care; each site had different socio-demographic profiles and end of life care services. This presentation focuses on the experiences of patients and their families.
Data Collection: The main methods of data collection were interviews and focus groups with 8 patients, 4 primary family carers, 3 members of family/friends, 19 volunteers and 23 professionals that explored their experiences of care and support.
Data Analysis: Analysis of the lived experience was Interpretative Phenomenology Analysis, supported by NVivo 10 for data management. The analysis drew on the interview data plus patient diaries and mapping of the care network of people being cared for, plus their family members, friends and volunteers, and professionals.
The analysis allowed the exploration of the ways families, friends, volunteers and professionals supported people at end of life. The analysis presented here explores this from the perspective of those being cared for and their informal carers.
Findings: The degree of formal and informal support and care, varied depending on; individual circumstances, preferences, care needs, social support structures, health and social care services available to them either free of charge or with payment. Emotional labour of informal carers was identified as an important theme.
The voices of patients’ and their family members are seldom heard and there were differences with how people at end of life care received formal and informal care and support. Within the stories there were highlights of how Compassionate Communities approaches in different ways had extended formal care and blurred the boundaries between formal and informal care.