Caring for Children Dying from Cancer at Home: a Qualitative Study of the Experience of Primary Care Practitioners

Background. The rarity of childhood cancers makes providing palliative care in the community an unusual event for primary care practitioners. Providing this care requires effective interprofessional collaboration with the team that forms to provide the care often working together for the first and only time. Objective. To explore the experiences of primary care practitioners following their involvement in the palliative care of a child with cancer at home. Methods. The study design was a community-based qualitative study. The study location was the West Midlands region. Purposeful sample of GPs and community nurses involved in providing palliative care to 12 children. One-to-one in-depth interviews with 47 primary care professionals (10 GPs and 37 community nurses) and 5 facilitated case discussions were undertaken. Field notes were documented and grounded theory data analysis undertaken: chronological comparative data analysis identifying generated themes. Results. GPs had minimal input into the preceding care of children undergoing treatment for cancer but sought to re-establish their role at the child’s transition to palliative care. GPs felt they had a role to play and could add value to this phase of care, highlighted their continuing role with the child’s family and acknowledged that they had gained from the experience of contributing. However, lack of specialist knowledge and uncertainty about their role within the team made this more challenging. In contrast, community nurses were routinely involved in both active treatment and palliation care phases. There was little evidence of collaboration between the specialist and primary care professionals involved. There was considerable variation in out of hours provision across cases. Conclusions. Engaging primary care practitioners needs to be more actively anticipated and negotiated at the transition to palliation. Variation in out of hours care is another cause for concern. Enhancing inter-professional collaboration and planning during both active and palliative care phases may help. Keywords. Cancer, family medicine, palliative care, paediatric.

Evaluation of a Brief Intervention to Assist Health Visitors and Community Practitioners to Engage with Fathers as Part of the Healthy Child Initiative

Aims: To improve engagement of Health Visitors and Community Practitioners delivering the Healthy Child Programme with fathers. To evaluate a one-day, father-focused workshop with a supporting handbook for Practitioners. To identify institutional and organisational barriers to engagement with fathers. Background: The UK government policy encourages health professionals to engage with fathers. This derives from robust evidence that fathers’ early involvement with their children impacts positively on emotional, behavioural and educational development. Yet, there is little evidence that the importance of engaging fathers is reflected in Health Visitor training or that primary-care services are wholly embracing father-inclusive practice. The Fatherhood Institute (FI), a UK charity, has developed a workshop for Practitioners delivering the Healthy Child Programme. Method: A ‘before and after’ evaluation study, comprising a survey followed by telephone interviews, evaluated the impact of the FI workshop on Health Visitors’ and Community Practitioners’ knowledge, attitudes and behaviour in practice. A total of 134 Health Visitors and Community Practitioners from eight NHS Trusts in England attended the workshop from November 2011 to January 2014 at 12 sites. A specially constructed survey, incorporating a validated questionnaire, was administered before the workshop, immediately afterwards and three months later. Telephone interviews further explored participants’ responses. Findings: Analysis of the questionnaire data showed that the workshop and handbook improved participants’ knowledge, attitudes and behaviour in practice. This was sustained over a three-month period. In telephone interviews, most participants said that the workshop had raised their awareness of engaging fathers and offered them helpful strategies. However, they also spoke of barriers to engagement with fathers. NHS Trusts need to review the training and education of Health Visitors and Community Practitioners and take a more strategic approach towards father-inclusive practice and extend services to meet the needs of fathers.