Safeguarding children of adults in receipt of palliative care - Carole Comben

Child care and protection research
Published on 27 Mar 2012

Dr Carole Comben, University of Stirling speaks about a study that was conducted on the role of the palliative care social worker in safeguarding and promoting the welfare of children of adults who are receiving palliative care.

The background is that whilst there is a stress on the importance of the family in palliative care, reference in the literature generally refers to partners, adult relatives and carers. There is minimal research into families where a person who is receiving specialist palliative care has dependent children. The studies that have been undertaken show that the life-threatening illness of a parent has a major impact on family life both emotionally and physically, and particularly for children who rely on their parents for their physical and emotional support. There is also a lack of information about the work that palliative care social workers undertake with such families.

You are listening to a talk as part of the Childcare and Protection Research Collection, a partnership of Iriss and the Scottish Childcare and Protection Network.

More information on the research

Comben C (2010) Swamp territory: The role of the palliative care social worker in safeguarding children of adults who are receiving specialist palliative care, Stirling: University of Stirling (see attached file).

Date of recording
Audio transcript

Child care and protection research collection

Transcript of talk by Carol Comben recorded 17 March 2012

My name is Carol Comben. The focus of the study is the role of the palliative care social worker in safeguarding and promoting the welfare of children of adults who are receiving specialist palliative care. The background to this is that whilst there is a stress on the importance of the family in palliative care, reference in the literature generally refers to partners, adult relatives and carers. There is minimal research into families where a person who is receiving specialist palliative care has dependent children. The studies that have been undertaken show that the life threatening illness of a parent has a major impact on family life - both emotionally and physically, and particularly for the children who rely on their parents for their physical and their emotional support. There is also a lack of information about the work that palliative care social workers undertake with such families.

The wellbeing of every child is now the focus of the governments of England, Scotland and Wales. All people who have contact with children and families in their everyday work, including those who do not have a specific role in relation to child protection, have a duty to safeguard and promote the welfare of children.

There have been studies exploring the role of workers in adult services which highlight the many difficulties and challenges, however there is a gap in the literature regarding the role of social workers in palliative care work with children where a parent is terminally ill.

This study therefore examines what palliative care social workers understand by the term "safeguarding children" and how they and other members of the palliative care multidisciplinary team identify situations where there are concerns about the present and future care of a child. These concerns could have existed prior to, arisen because of, been exacerbated by or become evident because of the parent's illness. The purpose of the study was to draw and analyse a picture of the real life work of the palliative care social workers with children and their families. This included the palliative care social worker's perception of the quality of their relationship with the local authority Children's Services, as well as a consideration of the support and training they receive to help them in their task of safeguarding children.

The study gathered the views of palliative care social workers, mainly working in England, but also in Scotland and Wales. Information was gathered in three ways during the period June 2007 to November 2008. Twenty two workers contributed in focus groups and fifty seven completed a questionnaire, of whom seventeen were interviewed individually. The majority of participants were from combined inpatient and day hospices, with others based in community services, hospitals and inpatient hospices. The overwhelming response from the palliative care social workers was that safeguarding children carried a much broader remit than child protection alone. One worker said that ensuring children are safe in the widest possible way, and not just at risk from a particular person, was their view of what this meant.

However, whilst the findings suggest that palliative care social workers were aware of the requirement for them to safeguard and promote the welfare of children, the extent to which this was carried out varied considerably. Most embraced it enthusiastically and considered themselves to be competent, whilst others felt less skilled and knowledgeable. It was the child's emotional needs during the parent's terminal stage of the illness that caused the workers most concern. Whilst the physical, emotional and sexual abuse was seen to be an important part of safeguarding, such abuse was reported to be a rare occurrence. However, there were workers who considered that some children experienced unwitting emotional neglect or harm due to their parents being caught up with their own emotions and difficulties. Safeguarding children was considered to be an agency wide responsibility, with all staff being required to attend Child Protection training. Generally the agencies were considered by the palliative care social workers to be child friendly and child centred, although there were some exceptions where the response of a few medical and nursing staff was thought to be poor. Nearly all reported that there was a Child Protection Policy in place in their agency. There were occasions when decisions about referring a family to Children's Services was delayed due to medical and nursing staff considering such action would be too upsetting for the parent. Also mentioned was the unavailability of senior agency staff or a lack of staff in post who could give appropriate guidance, particularly in situations where decisions were needed to be made quickly. This lack of guidance could cause lone palliative care social workers particular problems. In addition, there was also a fear that by making a referral, the dying parent might withdraw from the palliative care service as a whole, or the palliative care social worker in particular and this was reported to have happened in some instances.

The issue of parental capacity challenged many of the palliative care social workers - what is reasonable in the circumstances where a parent is dying? There was an acknowledgement that illness might prevent parents from parenting in the way that they had previously, which in some instances may cause a child to be at risk. The dilemma for workers appeared to be "whose needs should be taken in priority - those of the dying parent or the child"? There was a tension of accepting less than adequate care for the child, knowing that it was likely to be short term, against taking action and alienating the parent. It was the accepted view that short term measures needed to be affirmed to assist the parents in the care of their children. Generally the workers saw the family as their priority, with a focus on children - being alert to their needs, especially emotional ones, and this meant offering support to parents to help them understand their children's needs, and particularly keeping them informed of what was happening.

Palliative care social workers believe that they would be more effective if their social work role was clarified and their role with children affirmed within the workplace. Also, their practice would be enhanced if they had more time to get to know the families and to provide follow up, had more experience of working with children and received more training to keep up to date in child welfare matters.

Whilst palliative care social workers considered safeguarding children to be part of their role; a small element of their total workload. One worker reported being involved with fifteen families a year, whilst another was unable to give examples of any recent involvement. Almost all referrals were reported to come from members of the multidisciplinary team, mainly from the nursing staff. There was a low rate of self-referral, and this may have been linked to the negative perceptions of social work generally.

Whilst there was a general praise for the community nursing staff regarding their ability to recognise the needs of children and to raise concerns, there was a few reported instances where this was not the case. A small minority was believed to concentrate solely on the needs of adults and showed a noticeable lack of knowledge about child development. There was also a view that some nursing staff acted as gatekeepers and filtered families away from the palliative care social worker. A small number of the palliative care social workers believed that the social work role was not generally understood by the team, with some lone works again feeling particularly vulnerable. Reasons for referrals fell into four main categories - advice and support to parents about informing children about a parent's illness and imminent death - the daily care of children during the period of illness and beyond - planning for the future care of children following a parent's death - and advice and support to parents regarding children's behaviour. However, once a palliative care social worker engaged with a family, further areas of concern had often become apparent due to the progression of the illness, ongoing assessment, the ability of the family to share concerns, as well as a development of trust in the worker. There was evidence that referrals to the workers were not always made in good time. Reasons for delay included a late referral to the palliative care service itself, or nursing staff not making a referral until a crisis point was reached. The workers also recognise that some families may refuse help offered by a social worker, and this resistance was reported to be particularly noticeable in vulnerable families who may be concerned that their children could be removed from their care. Often palliative care social workers were dependent on nursing staff introducing them positively to the family, and this was often commented that nurses said "our social workers are different".

So the findings revealed a complex process, frequently affected by professional roles and team functioning which has not been previously addressed in literature. The process was influenced by the value that palliative care social workers placed on the significance of safeguarding the needs of children and their own confidence in working with and for these children. Previous studies had drawn attention to the many difficulties and issues that may face children and families when a parent is dying from a terminal illness, and in this study the workers described situations where they were concerned about the present and future care of children in such families. All age groups were represented in the sample, and there were more mothers than fathers who were dying, approximately a third of whom were one carers.

Three main themes emerged.

The first theme was concern with the effects of the parent's illness on a child and included such issues as a child's awareness of the illness, how children were informed about it, its impact on the child, the parent's coping abilities and care arrangements for children after the parent's death. Children of lone parents who are dying could be placed in an uncertain situation. Not only did they have to cope with the terminal illness of their parent and the subsequent loss, but also their future may not have been known or secured.

The second theme referred to the relationship context surrounding the illness and highlighted changes in the family functioning including role changes and the impact of relationships on the child's care. The changing nature of the illness may worsen an already difficult relationship between a parent and child. Examples highlighted aspects that are either not featured or minimally so in research studies, for example children living in neglected or abusive situations and families where there was existing conflict between parents, including situations of domestic violence.

The third theme addressed an aspect that was missing from most of the existing studies, which was psychosocial in approach and appeared to pay little attention to the social context. The issues here related to poverty, gender roles and immigration status. Concern about finances were seen as an extra burden carried by parents, which in turn impacted on their children. Severe financial difficulties were often due to a parent being unable to continue working, either because of illness or because of taking on caring responsibilities. Poor quality housing was also identified as an issue for many families. For those children where a parent's immigration status was in question there were additional stresses on the family, including coping with the legal procedures, uncertainty and possible financial hardship. There were reports of the Home Office allowing families to remain in the family only until the ill parent died. Leaving the country would mean that a child would not only be losing a parent, but also friends and a familiar way of life.

In working with children and their families, palliative care social workers claimed ownership of a child centred approach to their work, however whilst the study established that their work was wide ranging, engaging with parents was the main vehicle for promoting children's welfare. Where concerns were raised about the particular care of children, it appeared that they were not always seen by palliative care social workers. They did not always deem this to be necessary, as the work was undertaken through the parents or nursing staff. However, not all agencies were reported to be supportive of direct work being undertaken with children - the emphasis rather being on work with parents. As many palliative care social workers were not working on a regular basis with such families, there was consequently a lack of opportunity for them to build up knowledge, understanding and expertise - not only about child care practice, but also about the underlying legislation, policies and guidance. Indeed there were those who considered that they did not have the skills and/or experience to offer a suitable service to children directly. A family systems approach was evident in many of the practice examples given. Workers appear to have a sound knowledge base about child development, attachment and the impact of bereavement on children. There was acknowledgement that child related personal and previous work experiences gave palliative care social workers confidence in their work with children. However, restrictions of time available due to the impact of the illness meant that building relationships and trust and carrying out in-depth assessments were often limited.

There were, however, reports of agencies that either did not encourage or allow palliative care social workers to provide direct support to children after the death of a parent. The policy rather was to provide support to them via the surviving parent. This would seem to suppose that the relationship between the parent and child was a positive one - this however, may not always be the case and also denied a child centred approach. There were examples given where children had built up a positive relationship with a palliative care social worker prior to the parent's death and were seeking continued support from the worker, but this was not encouraged by the agency. This could mean another loss for the child and a lack of trust in adults.

Another focus of the study was the quality of the relationships between palliative care social workers and social workers and Children's Services from the perspective of palliative care social workers. The findings confirm those in other studies which have examined relationships between Adult Care Service workers and those in Children's Services. In the main, interagency cooperation was not a regular feature in everyday practice, and there was a frustration and disappointment that this should be so. Whilst there were pockets of cooperation and productive joint working, these were in the minority. There appeared to be a range of impediments to productive cooperation, with poor communication being a key issue. For some palliative care social workers there was a fear of alienating the family by involving Children's Services. Occasionally difficulties occurred due to a lack of information about each other's tasks and responsibilities. There did not appear to be any sustained attempts by managers in either setting to alter the situation. Indeed, palliative care social workers had tried to improve communication, but these attempts tended to fall by the wayside due to a lack of time and effort. A commonly held view by palliative care social workers was that Children's Service social workers did not have enough understanding of death and dying and its impact on families, particularly in relation to children, and hence shied away from any involvement.

The issue of thresholds was a recurring one - many children deemed to be in need by the palliative care social workers were not considered to be a priority by the local authority and services were not made available to them. This lack of response from local authority social workers left palliative care social workers with a feeling of letting down the child and family, as well as feeling powerless and concerned with the consequences for children. Some workers were therefore reluctant to make future referrals as a consequence of this previous lack of response to requests.

This was a one-dimension study in the sense that no children or parents were involved, and there is a lack of information therefore from other professionals - both in the multidisciplinary team and in Children's Services. However the study has been successful in extending the knowledge about the practice of palliative care social workers in a particular aspect of their work that is currently under-researched. It also contributes to the knowledge about how workers in adult focused care and health services safeguard and promote the welfare of children with whom they have contact in their everyday work. It also continues the debate around the extent to which services for adults are child centred.

Children should be recognised as social actors with their own views and concerns so that their welfare be known and promoted. If all setting that provide palliative care service acknowledge the presence and involvement of children, it would help to ensure that children in the family are acknowledged from the beginning and their circumstances and needs taken into account. Palliative care social workers should receive appropriate training and ongoing professional support to enable them to develop their knowledge and skills so that they can provide an appropriate service for children and their families. In addition, the quality of the relationship between palliative care social workers and local authority social workers requires to be examined further in order to improve communication. This would help to establish ways in which the needs of this community of children can be fully understood and realised. In these ways, the role of palliative care social workers in safeguarding children of adults who are receiving specialist palliative care would be made more certain. Examination of the involvement of palliative care social workers illustrated the dedication of those workers involved and that dynamic nature of their task, as well as the benefits and difficulties in carrying it out and the swampy territory in which it is situation.