Exploring the Experiences of Community-based Children's Nurses Providing Palliative Care

Aim: To explore the experiences of community children’s nurses (CCNs) and children’s palliative care nurses (CPCNs) who provide end-stage palliative care to children with cancer in the family home. Method: A qualitative approach was adopted. One-to-one interviews and facilitated case discussions were undertaken with 30 community nurses who had provided palliative care to a child or young person with cancer. A grounded theory approachwas used for data analysis. Findings: Because of the relative rarity of childhood cancer many CCNs and CPCNs engage infrequently in the palliative care of children or young people. This makes it difficult for them to develop and maintain knowledge and skills. There is a variation in the out-of-hours service provision available to families. Conclusion: Further funding is needed to develop teams of trained, experienced CCNs and CPCNs who can provide palliative care for children and young people 24 hours a day and 365 days a year. Keywords Community nursing, oncology, out-of-hours services, palliative care

Using Social Worlds Theory to Explore Influences on Community Nurses’ Experiences of Providing Out of Hours Paediatric Palliative Care

Abstract Background: Paediatric oncology palliative care in the community is rare and nationally there is a lack of standardisation of out of hours nursing service provision. Objectives: This paper seeks to explore influences on the experiences of paediatric nurses providing out of hours palliative care within the family home to children with cancer. The study used social worlds theory to aid identification and demonstration of the findings. Methods: Twelve community-based palliative cases were purposively selected from children with cancer treated at one regional centre. Tape-recorded interviews were undertaken with 54 health professionals (general practitioners, community nurses and allied health professionals) involved in providing their palliative care and five facilitated case discussions completed. Data analysis followed a grounded theory approach; chronological comparative data analysis identifying generated themes. Social worlds theory was used as a framework to examine the data. Results: Nurses’ experiences are shaped by their social world and those of the nursing team,child and family and the inter-professional team providing the care. The lack of a formalised service, sub-optimal inter-professional working and impact of social worlds influence the experience of the nurse. Conclusions: Social worlds theory provided a new perspective in understanding these experiences based within a paediatric palliative care setting, knowledge that can be used to inform service provision.

How has the Personalisation of Social Care Impacted on Service Users with Dementia?

The personalisation agenda is a government initiative aimed at transforming adult social care through giving service users choice and control over the care they receive. A key part of this agenda is the provision of direct payments; cash payments made to individuals eligible for social care services which allow them to manage their own care. Research suggests that direct payments can enable people with dementia to stay in their own home for longer and experience greater choice, flexibility and an improved social life. However very few people with dementia currently access direct payments. The objective of this research was to explore the social care experiences of people with dementia in relation to their access to and use of direct payments. 26 semi-structured interviews were conducted with people with dementia in receipt of social care services in the community, and their carers and social workers, and focus groups held with two community social work teams. It was found that direct payments tended to be seen as a fall-back option, for example as the only alternative to residential care, or as a solution to problems with traditional services. Direct payments appeared to afford particular benefits to people with dementia in terms of flexibility, continuity of care and access to local facilities. It is therefore important that this group are enabled to access direct payments. The second (ongoing) phase of this research comprises the design and pilot testing of an intervention aimed at improving access to direct payments by people with dementia.

Best Practice for Providing Social Care and Support to People Living with Concurrent Sight Loss and Dementia: Professional Perspectives

Purpose-Approximately 100,000 people in the UK aged 75 and over have concurrent dementia and sight loss, but current understanding of their experiences, needs and preferences is limited. The purpose of this paper is to report on a research project that explored the provision of social care and support for older people with both conditions. Design/methodology/approach-The project was a collaboration between the universities of York, Worcester, Bournemouth and Cambridge, supported by the Thomas Pocklington Trust and the Housing and Dementia Research Consortium. Data for this paper were drawn from focus groups held in 2013 involving 47 professionals across the dementia, sight loss and housing sectors. Findings-Thematic analysis identified five main barriers to providing high-quality, cost-effective social care and support: time constraints; financial limitations; insufficient professional knowledge; a lack of joint working; and inconsistency of services. The requirements of dementia and sight loss often conflict, which can limit the usefulness of equipment, aids and adaptations. Support and information needs to address individual needs and preferences. Research limitations/implications-Unless professionals consider dementia and sight loss together, they are unlikely to think about the impact of both conditions and the potential of their own services to provide effective support for individuals and their informal carers. Failing to consider both conditions together can also limit the availability and accessibility of social care and support services. This paper is based on input from a small sample of self-selecting professionals across three geographical regions of England. More research is needed in this area. Practical implications-There are growing numbers of people living with concurrent dementia and sight loss, many of whom wish to remain living in their own homes. There is limited awareness of the experiences and needs of this group and limited provision of appropriate services aids/adaptations. A range of measures should be implemented in order to support independence and well-being for people living with both conditions and their family carers. These include increased awareness, improved assessment, more training and greater joint working. Social implications-People living with dementia or sight loss are at high risk of social isolation, increasingly so for those with both conditions. Services that take an inclusive approach to both conditions can provide crucial opportunities for social interaction. Extra care housing has the potential to provide a supportive, community-based environment that can help residents to maintain social contact. Originality/value-This paper adds much-needed evidence to the limited existing literature, and reflects the views of diverse professionals across housing, health and social care

A Community Hub Approach to Older People’s Housing

Purpose. This paper explores the potential of housing with care schemes to act as community hubs. The analysis highlights a range of benefits, barriers and facilitators. Design/methodology/approach. Data is presented from the ASSET project (Adult Social Services Environments and Settings) which used a mixed methods approach including a review of the literature, surveys and in-depth case study interviews. Findings. Most housing with care schemes have a restaurant or café, communal lounge, garden, hairdresser, activity room and laundrette, while many also have a library, gym, computer access and a shop. Many of these facilities are open not just to residents but also to the wider community, reflecting a more integrated approach to community health and adult social care, by sharing access to primary health care and social services between people living in the scheme and those living nearby. Potential benefits of this approach include the integration of older people’s housing, reduced isolation and increased cost effectiveness of local services through economies of scale and by maximising preventative approaches to health and wellbeing. Successful implementation of the model depends on a range of criteria including being located within or close to a residential area and having on-site facilities that are accessible to the public. Originality and Value. This paper is part of a very new literature on community hub models of housing with care in the UK. In the light of new requirements under the Care Act to better coordinate community services, it provides insights into how this approach can work and offers an analysis of the benefits and challenges that will be of interest to commissioners and providers as well as planners. This was a small scale research project based on four case studies. Caution should be taken when considering the findings in different settings.

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.

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.

What do GPs and Bereaved Parents Think About Paediatric Oncologists and Palliative Care?

Aim The aim of the study was to examine the experiences of bereaved parents and general practitioners (GPs) following the death of a child with cancer within the family home. This presenta-tion focuses on one of the findings; the parent and GP views on the hospital consultants’ involvement in the palliative care. Design A community based qualitative study.Setting West Midlands region, UK. Participants Purposeful sample of 18 GPs and 11 bereaved families. The sample was drawn from the families and GPs of children who had been treated for cancer at a regional childhood cancer centre and who subsequently died within the family home. Methods One-to-one semi-structured tape-recorded interviews were undertaken with GPs and bereaved parents following the death at home of a child with cancer. GPs were contacted three months after the death of the child and the parents at six months. Thematic analysis of the transcriptions was undertaken. Findings Parents described feeling abandoned at the transition to palliation when management of care transferred to the GP. Families did not perceive a seamless service of medical care between hospital and community. Where offered consultant contact was valued by families and GPs. Text and email were used by families as a means of asking the consultant questions. The GPs lacked role clarity where the consultant continued involvement in the care. Conclusions The transition to palliation and the transfer of care to community services needs to be sensitively and actively man-aged for the family and the GP. Medical care between tertiary andprimary care should be seen as a continuum. Improving GP: consultant communication could aid role clarity, identify mecha-nisms for support and advice, and promote the active engagement of the GP in the care. Exploring opportunities for integrated con-sultant: GP working could maximise mutual learning and support and enhance care provision. The level, access and duration of ongoing contact between consultants and families/GPs require clarity.

Providing Palliative Care for the Child with Cancer: The Experience of GPs

Background Childhood cancers are rare and general practitioners (GPs) have limited experience in caring for these children and even less in providing their palliative care. Most families prefer that their child is cared for at home in the palliative phase of their illness, with professional support from those known to them (Chambers and Oakhill 1995, Vickers and Carlisle 2000, Craft and Killen 2007). A community based qualitative study examined the experiences of ten GPs following their involvement in the care of a child with cancer receiving palliative care within the family home. Methods Data collection was through 1:1 in-depth interviews and facilitated case discussion supported by field notes and grounded theory analysis (chronological comparative data analysis identifying generated themes). Social worlds theory was used as a framework to aid examination, and facilitate critical understanding, of the experiences of the GPs. Findings This presentation focuses on five of the findings relating to the experiences of the GP; the impact of minimal contact; lack of knowledge and experience, uncertain role, out of hours service provision and the emotional toll. Findings highlighted that GPs often have to re-establish their role at the child’s transition to palliative care. Factors hindering the GP in this process include a deficit of specialist knowledge and experience of paediatric palliative care and lack of role clarity. Conclusions/points of interest Strategies for enhancing the role of the Macmillan team in supporting GPs have been identified by this study, such as enhanced collaborative working. Findings have also provided further confirmation of the substantial variation in out of hours medical palliative care provision; with evidence that some GPs work beyond their remit in providing informal out of hours care. This presentation details the findings of one aspect (the experiences of GPs) of a wider study that explored the experiences of 54 community based health professionals (GPs, community nurses and allied health professionals) who had been involved in caring for a dying with cancer receiving palliative care at home (Neilson 2009).

GPs Experience of Caring for Children with Cancer Receiving Palliative Care at Home

Background The study being undertaken 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 makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived by the family as the gatekeeper of care within the community. Aim The study is examining GPs perception of their role in caring for an individual child with cancer receiving palliative care and comparing this with families' perceptions of their GP's roles. Methodology The methodology incorporates tape-recorded semi-structured interviews, thematic framework analysis and Q methodology (QM) to capture the experiences of GPs who have cared for a child with cancer receiving palliative care as well as 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 Findings detailing GP experiences from the initial study along with the preliminary findings of the semi-structured interviews with parents and GPs will be presented. Papers' contribution The results will identify and clarify GPs perceptions of their roles, and what families perceive their GPs role to be, enabling development of strategies to support GPs roles. It is anticipated that findings will inform the wider field of palliative care generally and the practice of both hospital and community paediatricians.