Swampy territory: The role of the palliative care social worker in safeguarding children of adults who are receiving specialist palliative care

Abstract

There is minimal research into families where a person who is receiving palliative care has dependent children. In particular, there is a lack of information about the work that palliative care social workers undertake with such families. This study examines the role of the palliative care social worker in safeguarding and promoting the welfare of children of adults receiving specialist palliative care. This is a qualitative study involving the collection of information from a total of 57 palliative care social workers in three ways: focus groups, survey and semi-structured interviews. The analysis demonstrates that palliative care social workers understand the term 'safeguarding children' to mean more than child protection alone. The analysis also focuses on the process of referral, institutional barriers, supports for their work with children, and inter-agency collaboration. An equally important aspect of the analysis, and one generally neglected in psycho-social studies, relates to the socio-economic context of the palliative care social workers' work, including the effects of the immigration status of families on children. In the main, concerns about the present and future care of children come to the attention of palliative care social workers via members of the multidisciplinary team in which they are based. The numbers are reported to be relatively small in contrast to the total number of referrals received. The extent to which support to children is provided varies considerably; some palliative care agencies do not encourage palliative care social workers to work directly with children prior to bereavement and others restrict direct work with children post-bereavement. The main emphasis for all workers, however, is on support to the parents to help them understand their children's needs during the terminal phase of the illness. The well-being of children at this time of emotional stress is included in the palliative care social workers' definition of 'safeguarding children'. In addition, the wide-ranging examination of the palliative care social workers' involvement with the families illustrates the extent of the dedication involved in an under-resourced and little understood area of their work. Whilst palliative care social workers reported receiving basic training on child protection within their agency, with some themselves providing this training, further training on safeguarding children is not always available or known about. The amount and type of professional supervision and support is also varied, particularly in relation to child-care matters; not all have access to supervision from another social work professional. There are a small number of examples given in the study where children are considered to be at risk in some way. Children cared for by lone parents are recognised as being especially vulnerable, particularly if future care plans are not in place before the death of the parent. Also identified as vulnerable are children of parents whose immigration status is in question as their future location may be in doubt, placing children and the surviving parent under additional stress. One of the major difficulties for palliative care social workers is securing support services from local authority children's services. Whilst there are examples of collaboration and co-operation, the findings in this study echo those of others which examine the relationship between adult and children's services. In this study, palliative care social workers speak of frustration and disappointment in the responses they receive, and they are concerned that the needs of children of dying parents are not understood. This study contributes to the debate about the focus of children in care services for adults and how staff may be supported in their task of safeguarding and promoting the welfare of children. This study also adds to the limited existing knowledge about palliative care social work practice.