A prospective study on the characteristics and subjects of pediatric palliative care case management provided by a hospital based palliative care team

Abstract

BackgroundCase management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. We aim to describe the contents of care provided, utilization of different disciplines, and times of usage of a pediatric palliative care case management program compared for patients with malignant disease (MD) and non-malignant disease (NMD).MethodsA three-month prospective study, with questionnaires filled in by members of a pediatric palliative care team (PPCT) for each contact with parents.ResultsFour hundred fifty-five contacts took place with parents of 70 patients (27MD, 43NMD). Sixty-two percent of all contacts were with the specialized nurse. The child life specialists, psychologist and social worker were also regularly consulted, the chaplain was not consulted. Ninety-five percent of all contacts took place between 8 am and 6 pm during weekdays, a limited number between 6 pm and 9 pm. Twenty-five percent of all contacts were proactively initiated by the PPCT, 25 % were initiated by parents. In these care characteristics, no differences were seen for MD and NMD patients. Psychosocial topics were addressed most frequently. MD patients consulted the PPCT more often about school and NMD patients about socio-economic issues.ConclusionsAll different disciplines of the PPCT were regularly consulted, except for the chaplain. With an easy accessible team with a highly pro-active approach, availability from 8 am to 9 pm seems sufficient to accommodate patient’s and parent’s needs. More anticipation seems required for socio-economic topics. This insight in pediatric palliative case management can provide guidance in the development of a new PPCT.

What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders

“…The emphasis on training and valuing staff in our work is consistent with previous research which has emphasised the need to upskill staff [ 19 , 56 , 57 ]. A number of studies have highlighted the lack of recognition of the knowledge and expertise of non-qualified care staff who are most closely involved in delivering care [ 58 , 59 ] and the implications this can have for the provision of care [ 60 ]. Previous studies have also emphasised the need for person-centred management and interventions to meet the emotional support needs of care home staff [ 61 – 63 ].…”

“…The question remains as to how best to translate these findings into practice. Other studies have suggested the introduction of new roles such as a mobile specialist palliative care team in dementia to provide expert advice and to support the usual care-giving team [ 28 ], or a ‘key worker’ to co-ordinate care [ 50 ]. A number of innovative options to improve EoLC in dementia have been tested, including dementia specific hospice care [ 67 ]; specialist dementia palliative care [ 68 ]; a specialist community-based multi-disciplinary team focused on facilitating home death [ 69 ]; an ‘integrated care leader’ [ 70 ]; audit/feedback systems [ 71 ], decision support tools [ 72 , 73 ] and a multifaceted intervention in long term care [ 74 ].…”

“…While a number of studies have integrated the perspectives of two or more stakeholder groups [ 19 , 24 – 27 ], few have included the perspectives of people with dementia, family carers, health and social care professionals, and the majority have focused on people with dementia living in care homes. Only a minority of these studies have used their findings to develop evidence-based interventions for implementation and evaluation in practice [ 14 , 28 ].…”

Paediatric palliative care and intellectual disability—A unique context

“…After‐hours support, as part of an emergency management plan, may be helpful (Bradford, Irving, Smith, Pedersen, & Herbert, ), while a multidisciplinary team‐based approach that is proactive in following up issues for families, including psychosocial support and socio‐economic considerations, is also of benefit (Jagt‐van Kampen et al., ).…”

A mixed-method evaluation of a volunteer navigation intervention for older persons living with chronic illness (Nav-CARE): findings from a knowledge translation study

“…The study reported here builds upon the culmination of collaborative work that entailed developing the conceptual and theoretical foundations for older person navigation [ 47 , 48 ]; creating, testing, and refining curriculum for volunteer navigators [ 49 ]; and conducting three incremental pilots to determine the feasibility and acceptability of Nav-CARE [ 50 , 51 ]. These pilots provided care to older persons living with a variety of advanced chronic illnesses, of which cancer was the most prevalent.…”