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Abstract:

Background: The World Health Organization defines palliativecare as encompassing the control of pain and other symptoms and psychological, social, and spiritual care. Most patients experiencing life-threatening illness want the medical team to address their spirituality. Nevertheless, the provision of spiritual care in everyday practice remains difficult. Health care providers face many obstacles, such as discomfortwith the subject, inability to find the right words or a lack of specific training. line-height:115%">Aim: Calibri" lang="EN-GB">The overall aim of this thesis was to study spirituality in palliative home care from different perspectives. We aimed to answer the following questions: how do general practitioners (GPs) perceive their role in spiritual care (RQ1)? What are the key elements of spiritual care in palliative home care (RQ 2)? What are the key outcome measures for spiritual care in palliative home care (RQ 3)? What are GPs’ views on the use of the FICA tool for spiritual history taking (RQ 4)? How do GPs, nurses, and their patients experience thears moriendi model (AMM) as a tool for spiritual history taking (RQ 5)?What is the effect of structured spiritual history taking on the spiritual well-being of palliative patients (RQ 6)? What challenges need to beovercome to recruit patients with an incurable, life-threatening illness for research in home care (RQ 7)? line-height:115%">Methods: Firstly we carried out a qualitative synthesis of the evidence (RQ 1). We then organised an invitational conference involving experts in palliative and spiritual care to reach a consensus on key elements and outcome measures for spiritual care in palliative home care (RQ 2 & 3). For this we used the nominal group technique, followed by atwo-stage web-based Delphi process. In a third stage we conducted semi-structured interviews with GPs to investigate their views about the FICAtool (RQ 4). We piloted the AMM and subsequently interviewed health care providers and palliative patients to investigate their experiences with the model (RQ 5). Afterwards we carried out a cluster randomised controlled trial (RCT) to investigate the effect of structured spiritual history taking on the spiritual well-being of palliative patients (RQ 6). The health care providers assigned to the intervention arm of the RCT completed a survey immediately after taking the history and participated in a semi-structured interview a few weeks later to investigate their experience with the AMM (RQ 5). Finally, we described the challenges we met in the recruitment of health care providers and palliative patients for the RCT (RQ 7).line-height:115%">Results: Many GPssee it as their role to identify and assess patients’ spiritual needs despite perceived barriers such as lack of time and lack of specific training (RQ 1). The experts attending the invitational conference reached consensus about 14 key elements and three key outcome measures for spiritual care (RQ 2 & 3). The FICA tool seems to be a usable tool for spiritual history taking, provided that certain substantive and linguisticadjustments are made (RQ 4). Guided by the AMM, health care providers can gather information about the context, life story, and meaningful connections of their patients, enabling them to organise person-centred palliative care with respect for the spiritual dimension (RQ 5). Spiritual history taking was not found to have any effect on patient scores for spiritual well-being, quality of life, health care relationship trust,or pain (RQ 6). Finally, recruitment of GPs, early identification of palliative care patients, and patient-provider communication about end-of-life issues were major difficulties in our trial (RQ 7).line-height:115%">Conclusions: Health care providers generally perceive a palliative care process that focuses attention on the patient’s spirituality as a tough but rewarding experience. The FICA tool and the AMM are usable for the clinical assessment of spirituality, provided that they are used in a spontaneous way, according to the individual needs of the patient. These tools furnish greater insights into patients’ spiritual needs and resources and help caregivers to establish person-centred end-of-life care. More research is needed to better understand the role of the GP as spiritual caregiver, to design an interdisciplinarymodel for spiritual care in palliative home care and to develop and evaluate outcome measures for spiritual interventions.