Understanding the Needs of People with Dementia and Family Carers

This is the first in a short series that presents case study examples of the positive work achieved by trusts who participated in the Royal College of Nursing's development programme to improve dementia care in acute hospitals. When a person with dementia is in hospital, poor understanding of individual needs and preferences can contribute to a lack of person-centred care. Similarly, the needs of family carers can often be overlooked and staff do not always appreciate these needs at such a stressful time. This article illustrates how three NHS trusts have addressed these issues. To help staff get to know patients with dementia, Salford Royal NHS Foundation Trust has implemented a patient passport. Similarly, The Shrewsbury and Telford Hospital NHS Trust has implemented a carer passport that overcomes the restrictions imposed by hospital visiting hours. Royal Devon and Exeter NHS Foundation Trust also focused on carers, holding a workshop to elicit feedback on what was important to them. This was a useful means of engaging with carers and helped staff to realise that even simple changes can have a significant effect.

Undertaking Sensitive Interviews: a Researcher’s Experience of Interviewing Bereaved Parents and Family GPs

The presentation describes the researcher’s experience of undertaking sensitive interviews. Background The interviews form part of a current study that is examining bereaved parents’ experience of caring for their child at home as well as the experience of their GP. This study builds on earlier work that found general practitioners (GPs) were at times uncertain of their role in paediatric palliative care and questioned whether their involvement had been beneficial to the child and family. The rarity of childhood cancer deaths makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived as the gatekeeper for care within the community. Presentation aim To describe the process of both the preparation for, and undertaking of, sensitive interviews. Study methodology The methodology incorporates tape-recorded semi-structured interviews, thematic framework analysis and Q methodology (QM). QM will be used to capture the experiences of GPs who have cared for a child with cancer receiving palliative care as well the perspectives of care experienced by the families. The semi-structured interview sample comprises 10 families (parents/guardians) whose child has been treated at a regional childhood cancer centre and their GPs. A further 40-60 GPs will be involved in the QM. Findings The preparation for these interviews will be discussed and compared to the supportive bereavement visits undertaken within the researcher’s role as a paediatric Macmillan nurse. The experience of undertaking the interviews will be exemplified with findings from the initial and the current, study. Papers’ contribution The researcher’s experience of preparing for and undertaking sensitive interviews may prove beneficial to other researchers.