Co-construction of the family-focused support conversation: a participatory learning and action research study to implement support for family members whose relatives are being discharged for end-of-life care at home or in a nursing home

Abstract

Background Many people move in and out of hospital in the last few weeks of life. These care transitions can be distressing for family members because they signify the deterioration and impending death of their ill relative and forthcoming family bereavement. Whilst there is evidence about psychosocial support for family members providing end-of-life care at home, there is limited evidence about how this can be provided in acute hospitals during care transitions. Consequently, family members report a lack of support from hospital-based healthcare professionals. Methods The aim of the study was to implement research evidence for family support at the end-of-life in acute hospital care. Informed by Participatory Learning and Action Research and Normalization Process Theory (NPT) we co-designed a context-specific intervention, the Family-Focused Support Conversation, from a detailed review of research evidence. We undertook a pilot implementation in three acute hospital Trusts in England to assess the potential for the intervention to be used in clinical practice. Pilot implementation was undertaken during a three-month period by seven clinical co-researchers - nurses and occupational therapists in hospital specialist palliative care services. Implementation was evaluated through data comprised of reflective records of intervention delivery (n = 22), in-depth records of telephone implementation support meetings between research team members and co-researchers (n = 3), and in-depth evaluation meetings (n = 2). Data were qualitatively analysed using an NPT framework designed for intervention evaluation. Results Clinical co-researchers readily incorporated the Family-Focused Support Conversation into their everyday work. The intervention changed family support from being solely patient-focused, providing information about patient needs, to family-focused, identifying family concerns about the significance and implications of discharge and facilitating family-focused care. Co-researchers reported an increase in family members’ involvement in discharge decisions and end-of-life care planning. Conclusion The Family-Focused Support Conversation is a novel, evidenced-based and context specific intervention. Pilot implementation demonstrated the potential for the intervention to be used in acute hospitals to support family members during end-of-life care transitions. This subsequently informed a larger scale implementation study. Trial registration n/a.

The Implementation of Evidence-Informed Family Nursing Practices: A Scoping Review of Strategies, Contextual Determinants, and Outcomes

“…Most implementation efforts entailed an educational component, which was, except for one study ( Wong, 2014 ), combined with the use of a local implementation team or champion/facilitator roles that provided clinical mentoring and supervision ( Ahlqvist-Björkroth et al, 2019 ; Beierwaltes et al, 2020 ; Blöndal et al, 2014 ; Eggenberger & Sanders, 2016 ; Naef, Kaeppeli, et al, 2020 ; Naef, Kläusler-Troxler, et al, 2020 ; Petursdottir et al, 2019 ; Svavarsdottir et al, 2015 ; Toivonen et al, 2019 ; Weis et al, 2014 ; Zimansky et al, 2018 , 2020 ). Others used a quality improvement methodology that combined feedback loops and local capacity-building strategies ( Antolick et al, 2020 ; Duke et al, 2020 ; Kleinpell et al, 2019 ; Maree et al, 2017 ), and one study did not provide sufficient detail ( Wells et al, 2014 ). Most studies reported using more than one strategy (83%), with a median of three (minimum 1–maximum 5).…”

“…Three thematic threads were identified that depicted nurses’ and clinicians’ experience of implementing evidence-informed family nursing practices, based on the findings of 15 studies ( Boztepe & Kerimoğlu Yıldız, 2017 ; Duke et al, 2020 ; Gomes da Silva et al, 2016 ; Hamilton et al, 2020 ; Kleinpell et al, 2019 ; MacKay & Gregory, 2011 ; Mirlashari et al, 2019 ; Naef, Kaeppeli, et al, 2020 ; Naef, Kläusler-Troxler, et al, 2020 ; Petursdottir et al, 2019 ; Shah-Anwar et al, 2019 ; Toivonen et al, 2019 ; Wells et al, 2014 ; Wong, 2014 ; Zimansky et al, 2018 ; see Figure 2 ).…”

“…First, implementation entailed disruption , learning , and moving to new ways of practicing with families, which was reported in nine studies ( Boztepe & Kerimoğlu Yıldız, 2017 ; Duke et al, 2020 ; MacKay & Gregory, 2011 ; Mirlashari et al, 2019 ; Naef, Kaeppeli, et al, 2020 ; Naef, Kläusler-Troxler, et al, 2020 ; Petursdottir et al, 2019 ; Shah-Anwar et al, 2019 ; Wong, 2014 ). The introduction of evidence-informed family nursing practices involved the disruption of habitual practices and care processes, as Duke and colleagues (2020) reported: “(It) pulled apart their practice (by) flipping conversations to focus on the family” (pp. 7–8).…”

“…Third, nurses and other clinicians observed benefits in quality of care ( Duke et al, 2020 ; Petursdottir et al, 2019 ; Toivonen et al, 2019 ; Wells et al, 2014 ; Wong, 2014 ), which encouraged implementation. For example, nurses experienced their work as “more effective” ( Petursdottir et al, 2019 ) and as “enhancing family care” ( Duke et al, 2020 ).…”

Effects of Family Participatory Nursing on Clinical Outcomes of Premature Infants in NICU and Families’ Psychological Status

“…Through PPT presentation, picture demonstration, and one-to-one guidance, the nurse teaches infants' families a variety of nursing skills, including basic neonatal nursing. After mastering these skills, the families can make sensory perception intervention on infants, which can not only improve the infants' excitatory-inhibitory function and enhance the brain regulatory effect but also raise their environmental adaptability, thus allowing infants to have better neuromotor and intellectual development [ 21 ]. Previous evidence found that the family participatory management mode can significantly increase the 18-month MDI and PDI scores of premature infants, with a similar effect on the growth and development of premature infants of different gestational ages [ 22 ].…”