The rising population of older people in the UK (Office for National Statistics 2010) and pressure on healthcare services to reduce costs indicate the necessity of developing strategies that enable coping and independence. Loss through death of close family members, partners and friends is a key factor that inhibits physical, emotional and social well being of older people. The research carried out for this thesis explored bereavement in healthcare settings where contacts with bereaved older people commonly occur, and used data collected to develop guidelines for practice. The guidelines provide research informed enhancement to bereavement care and develop opportunities for meaningful interactions. They complement current policy development work on bereavement in healthcare settings (The Scottish Government 2011). A qualitative design drawing on phenomenological methodology was used to explore healthcare staffs’ experiences of caring for bereaved older people, and older people’s experiences of being bereaved and bereavement care. Theoretical sampling took place to recruit staff from a range of roles in general practice and community nursing, hospital wards and care homes, as well as a small sample of bereaved older people. Thirty nine participants took part in in-depth interviews that yielded four key themes: bereavement care depends on a relationship between healthcare staff and relatives; preparation for a relative’s death may not equate to preparedness for bereavement; the ‘Open Door’ to bereavement care is only slightly ajar, and bereavement care supports progression of the ‘Rolling Ball’ of life. The themes informed development of the guidelines in terms of structure and content. Recommendation statements consider bereavement care before the death; at the time of the death; and follow up in the weeks and months afterwards. Criteria in the recommendations provide suggestions for enhancements to practice that facilitate appropriate response to bereavement in older people. Consultation on the guidelines provided positive feedback that identified the potential to promote consistent interactions with bereaved older people, respond to needs and support coping.

<p>For most parents there is no imaginable event more devastating than the death of their child. Nevertheless, while bereaved parents grieve they are also expected to carry on with their life. The day-to-day activities that were once routine for these parents may now be challenging due to the emotional turmoil they are experiencing. To date parental bereavement has been described as complex, intense, individualized, and life-long and their grief responses are interwoven with their daily activities, but the nature of their daily life challenges are not known. </p><p>This dissertation highlights the significance of how parents respond to their bereavement challenges because bereaved parents have higher morbidity and mortality rates than non-bereaved parents or adults who have lost their spouse or parents. Many bereaved parents in their daily routines include activities that allow them to maintain a relationship with their deceased child. These behaviors have been described as “continuing bonds”, but with this dissertation the continuing bonds concept is analyzed to provide a clear conceptual definition, which can be used for future research.</p><p>Using the Adaptive Leadership Framework as the theoretical lens and a mixed method, multiple case study design, the primary study in this dissertation aims to provides knowledge about the challenges parents face in the first six months following the death of their child, the work they use to meet these challenges, and the co-occurrence of the challenges, and work with their health status. Bereaved parents challenges are unique to their individual circumstances, complex, interrelated and adaptive, as they have no easy fix. Their challenges were pertaining to their everyday life without their child and classified as challenges related to: a) grief, b) continuing bonds, c) life demands, d) health concerns, f) interactions, and g) gaps in the health care system. Parents intuitively responded to the challenges and attempted to care for themselves. However, the role of the healthcare system to assist bereaved parents during this stressful time so that their health is not negatively impacted was also recognized. This study provides a foundation about parental bereavement challenges and related work that can lead to the development and testing of interventions that are tailored to address the challenges with a goal of improving bereaved parents health outcomes.</p> / Dissertation

Bakgrund: Inom palliativ vård är en av de fyra hörnstenarna närståendestöd. Detta sker under vårdtiden men också i efterlevandestödet till närstående i deras sorgeprocess. Hur efterlevandestödet ska utformas varierar utifrån verksamheten och det råder ingen konsensus hur det stödet ska utformas. Utan en tydlig vetenskaplig förankring finns det risk att stödet baseras godtyckligt och att vissa behov inte tillgodoses. Genom ökad kunskap om olika interventioners effekter kan ett evidensbaserat efterlevandestöd utformas. Syfte: Att utforska olika interventioner för efterlevandestöd och dess effekt i närståendes sorgeprocess. Metod: Litteraturöversikt som är baserad på vetenskapliga artiklar publicerade mellan år 2010 och 2021. Analysen är gjord med induktiv ansats av 13 artiklar med Stroebe och Schuts pendlingsteori som teoretiskt ramverk. Resultat: Resultatet presenterar olika interventioner, från olika vårdkontexter, som närstående erhållit vid olika tidpunkter efter ett dödsfall. Interventioner från valda artiklar presenteras utifrån tre teman: Interventioner genom en symbolisk handling, interventioner som skedde individuellt samt interventioner som skedde i grupp. Slutsats: En interventions påverkan på sorgeprocessen är individuell och kan påverkas av flera faktorer. Oberoende av vilken intervention som genomfördes, var ett återkommande resultat i studierna att närstående upplevde sig sedda, bekräftade och normaliserade i sina känslor vilket skapade en positiv effekt på sorgeprocessen. Att stödet kändes standardiserat snarare än personligt var en viktig aspekt som ledde till att den positiva effekten kunde utebli eller i vissa fall ge en negativ effekt för närstående. Interventionerna är gjorda vid olika tidpunkter vilket försvårar att göra slutsatser om optimal tidpunkt. Det är dock av stor vikt att det finns rutiner i verksamheter för efterlevandestöd för att identifiera de närstående som har behov av utökade stödinsatser. / Background: In palliative care one of the four cornerstones is support for the family. This includes during the care period and also by providing bereavement care in their grieving process. How the bereavement care is provided differs between different care providers and there is a lack of consensus in the content. Without a clear scientific connection there is a risk that the support is planned from the care provider's personal experiences and some needs are not met. With an increased knowledge of different interventions and their effect can an evidence-based bereavement care be formed. Aim: To explore different interventions for bereavement support and their effect on the families grieving-process. Method: Literature review which is based on scientific journals published between the years 2010 and 2021. The analysis is made by an inductive approach on 13 journals with Stroebes and Schuts theory of dual process of bereavement as a theoretical framework. Results: The results present different interventions, from different care contexts, that relatives received at different times after a death. The various interventions were presented based on three themes: interventions through a symbolic act, interventions that took place individually and group interventions. Conclusion: The impact of an intervention on the grieving process is individual and can be influenced by several factors. Independently on which intervention was given, there was a recurring trend in the outcome of the studies that relatives experienced they were feeling seen, confirmed and normalized in their emotions which had a positive effect on their grieving process. The experience of the support felt standardized rather than personal was an important aspect which could lead to the positive effect could be absent orin some cases have a negative effect. The interventions are made at different times, which makes it difficult to draw conclusions about the optimal time. However, it is of great importance that there are routines inactivities for bereavement support in order to identify the relatives who have extended needs of support.

Bakgrund: Inom palliativ vård är en av de fyra hörnstenarna närståendestöd. Detta sker under vårdtiden men också i efterlevandestödet till närstående i deras sorgeprocess. Hur efterlevandestödet ska utformas varierar utifrån verksamheten och det råder ingen konsensus hur det stödet ska utformas. Utan en tydlig vetenskaplig förankring finns det risk att stödet baseras godtyckligt och att vissa behov inte tillgodoses. Genom ökad kunskap om olika interventioners effekter kan ett evidensbaserat efterlevandestödutformas. Syfte: Att utforska olika interventioner för efterlevandestöd och dess effekt i närstående sorgeprocess Metod: Litteraturöversikt som är baserad på vetenskapliga artiklar publicerade mellan år 2010 och 2021. Analysen är gjord med induktiv ansats av 13 artiklar med Stroebe och Schuts pendlingsteori som teoretiskt ramverk. Resultat: Resultatet presenterar olika interventioner, från olika vårdkontexter, som närstående erhållit vid olika tidpunkter efter ett dödsfall. Interventioner från valda artiklar presenteras utifrån tre teman: Interventioner genom en symbolisk handling, interventioner som skedde individuellt samt interventioner som skedde i grupp. Slutsats: En interventions påverkan på sorgeprocessen är individuell och kan påverkas av flera faktorer. Oberoende av vilken intervention som genomfördes, var ett återkommande resultat i studierna att närstående upplevde sig sedda, bekräftade och normaliserade i sina känslor vilket skapade en positiv effekt på sorgeprocessen. Att stödet kändes standardiserat snarare än personligt var en viktig aspekt som ledde till att den positiva effekten kunde utebli eller i vissa fall ge en negativ effekt för närstående. Interventionerna är gjorda vid olika tidpunkter vilket försvårar att göra slutsatser om optimal tidpunkt. Det är dock av stor vikt att det finns rutiner i verksamheter för efterlevandestöd för att identifiera de närstående som har behov av utökade stödinsatser. / Background: In palliative care one of the four cornerstones is support for the family. This includes during the care period and also by providing bereavement care in their grieving process. How the bereavement care is provided differs between different care providers and there is a lack of consensus in the content. Without a clear scientific connection there is a risk that the support is planned from the care provider's personal experiences and some needs are not met. With an increased knowledge of different interventions and their effect can an evidence-based bereavement care be formed Aim: To explore different interventions for bereavement support and their effecton the families grieving-process. Method: Literature review which is based on scientific journals published between the years 2010 and 2021. The analysis is made by an inductive approach on 13 journals with Stroebes and Schuts theory of dual process of bereavement as a theoretical framework Results: The results present different interventions, from different care contexts, that relatives received at different times after a death. The various interventions were presented based on three themes: interventions through a symbolic act, interventions that took place individually and group interventions. Conclusion: The impact of an intervention on the grieving process is individual and can be influenced by several factors. Independently on which intervention was given, there was a recurring trend in the outcome of the studies that relatives experienced they were feeling seen, confirmed and normalized in their emotions which had a positive effect on their grieving process. The experience of the support felt standardized rather than personal was an important aspect which could lead to the positive effect could be absent orin some cases have a negative effect. The interventions are made at different times, which makes it difficult to draw conclusions about the optimal time. However, it is of great importance that there are routines inactivities for bereavement support in order to identify the relatives who have extended needs of support.

Cette étude avait pour but d’évaluer, à partir d’un processus de co-construction avec les personnes concernées, dans un contexte de 1ère ligne, la mise en application d’interventions infirmières inspirées du Guide des meilleures pratiques de soins pour les endeuillés (GMPSE) auprès d’un couple ayant vécu une perte périnatale au cours des six dernier mois. Un devis de recherche d’étude de cas basé sur la démarche d’évaluation de la quatrième génération de Guba et Lincoln (1989) a été utilisé. Une infirmière expérimentée auprès des familles endeuillées, s’est inspirée de la guidance du GMPSE pour intervenir auprès d’un couple lors de cinq rencontres thérapeutiques, dont quatre ont été précédées d’une entrevue avec les personnes concernées . Ces entrevues ont permis à ces personnes d’identifier ensemble les interventions les plus utiles et les moins utiles. Le verbatim des rencontres et entrevues ont été enregistrées et transcrites à des fins d’analyses qualitatives, Les résultats de ces analyses font ressortir la pertinence des interventions inspirées du GMPSE et l’apport spécifique de la pratique infirmière auprès de la population visée. Il appert que la sensibilisation des décideurs et des cliniciens aux enjeux des personnes endeuilles soit nécessaire pour favoriser l’implantation du Guide dans les milieux de soins. Enfin, une meilleure appropriation du GMPSE est recommandée autant dans le cadre de la formation, que de la recherche et de la pratique en sciences infirmières. / The purpose of this study was to evaluate from a constructivist perspective, partnering with the stakeholders , the usefulness of nursing interventions inspired from The Best Practice Guidelines in Bereavement Care (BPGBC) in a first line context, during the follow up a couple whom had experienced a prenatal lost in the last six months. A case study design was used along with The Fourth Evaluation’s methodological approach designed by Guba and Lincoln (1989). An experienced nurse in the care of bereaved families, used the BPGBC to guide her interventions in five therapeutic meetings with the couple, followed by four interviews with the stakeholders. The interventions considered the most helpful and the less useful were identified. The gathering of the data and their analysis followed an interactive and ongoing process. The results support the pertinence of the nursing interventions inspired from the BPGBC, as well as the specific contribution of the nursing profession in the bereavement work. Implementing the BPGBC becomes a realistic goal when the managers and the clinical professionals are made aware of the issues encompassed by the grieving population. The nursing profession could incorporate the BPGBC in its training curriculum, in the research field and in the care offered to the bereaved population in different care settings.

Cette étude avait pour but d’évaluer, à partir d’un processus de co-construction avec les personnes concernées, dans un contexte de 1ère ligne, la mise en application d’interventions infirmières inspirées du Guide des meilleures pratiques de soins pour les endeuillés (GMPSE) auprès d’un couple ayant vécu une perte périnatale au cours des six dernier mois. Un devis de recherche d’étude de cas basé sur la démarche d’évaluation de la quatrième génération de Guba et Lincoln (1989) a été utilisé. Une infirmière expérimentée auprès des familles endeuillées, s’est inspirée de la guidance du GMPSE pour intervenir auprès d’un couple lors de cinq rencontres thérapeutiques, dont quatre ont été précédées d’une entrevue avec les personnes concernées . Ces entrevues ont permis à ces personnes d’identifier ensemble les interventions les plus utiles et les moins utiles. Le verbatim des rencontres et entrevues ont été enregistrées et transcrites à des fins d’analyses qualitatives, Les résultats de ces analyses font ressortir la pertinence des interventions inspirées du GMPSE et l’apport spécifique de la pratique infirmière auprès de la population visée. Il appert que la sensibilisation des décideurs et des cliniciens aux enjeux des personnes endeuilles soit nécessaire pour favoriser l’implantation du Guide dans les milieux de soins. Enfin, une meilleure appropriation du GMPSE est recommandée autant dans le cadre de la formation, que de la recherche et de la pratique en sciences infirmières. / The purpose of this study was to evaluate from a constructivist perspective, partnering with the stakeholders , the usefulness of nursing interventions inspired from The Best Practice Guidelines in Bereavement Care (BPGBC) in a first line context, during the follow up a couple whom had experienced a prenatal lost in the last six months. A case study design was used along with The Fourth Evaluation’s methodological approach designed by Guba and Lincoln (1989). An experienced nurse in the care of bereaved families, used the BPGBC to guide her interventions in five therapeutic meetings with the couple, followed by four interviews with the stakeholders. The interventions considered the most helpful and the less useful were identified. The gathering of the data and their analysis followed an interactive and ongoing process. The results support the pertinence of the nursing interventions inspired from the BPGBC, as well as the specific contribution of the nursing profession in the bereavement work. Implementing the BPGBC becomes a realistic goal when the managers and the clinical professionals are made aware of the issues encompassed by the grieving population. The nursing profession could incorporate the BPGBC in its training curriculum, in the research field and in the care offered to the bereaved population in different care settings.

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.