| 1. |
- Henriksson (Alvariza), Anette
(författare)
-
A support group programme for family members : an intervention during ongoing palliative care
- 2012
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Family members are central in providing care for patients with lifethreatening illness, but they often experience a lack of necessary preparation and knowledge, with a need for information and psychosocial support. The overall aim of this thesis was to investigate participant’s experiences as well as effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care.Methods: A mixed method design was used. Study I was retrospective descriptive and used a phenomenological method to analyse 10 face-to-face interviews about experiences of participating in the programme. Study II was retrospective descriptive and used qualitative content analysis to analyse 29 telephone interviews about experiences of the programme design. Study III was correlational and used a confirmatory factor analysis to psychometrically evaluate the preparedness for caregiving scale(PCS), caregiver competence scale(CCS) and rewards of caregiving scale(RCS) in 124 family members. Study IV was prospective quasi-experimental and used interferential statistics to investigate effects of the programme, assessing preparedness, competence, rewards, anxiety, depression, hope and health in 125 family members.Results: The main experiences of participation in the programme were; a sense of safety and belonging, confirmation, insight into the gravity of the illness, and a moment of rest. The programme was experienced as covering topics of interest, structured to make participants feel invited by the caring team and using an open approach that fostered a warm atmosphere. The Swedish versions of PCS, CCS and RCS were shown to be valid and reliable. Family members who participated in the programme significantly increased in preparedness, competence and rewards in relation to caregiving. No significant changes were shown for anxiety, depression, hope and health.Clinical implications: The results should provide encouragement in the challenging work to develop and deliverer interventions, with the explicit purpose of supporting family members in palliative care.
|
|
| 2. |
- Eklund, Rakel
(författare)
-
Barns erfarenheter av ”the Family Talk Intervention” : Att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård
- 2020
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- När en förälder i en barnfamilj får en livshotande sjukdom förändras livet för allai familjen. Barn som lever i denna situation rapporterar att de upplever oro och skuld relaterat till förälderns sjukdom. Dessutom har barnen en ökad risk för psykisk ohälsa. Brist på kommunikation inom familjen om sjukdomen och ämnen relaterade till den, har visat sig ha en negativ påverkan på hälsan. Trots detta finns endast ett fåtal stödinterventioner utvärderade för barnfamiljer i palliativ vård, och ännu färre utvärderade utifrån barns erfarenheter. The Family Talk Intervention (FTI) är en familjecentrerad intervention, med barnen i fokus, som visat på positiva effekter gällande sjukdomsrelaterad information och ökad kommunikation för barnfamiljer inom psykiatrisk och somatisk vård. Det övergripande syftet med denna avhandling var att utforska barns erfarenheter av FTI och att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård. Avhandlingen påvisar att de flesta barnen ville veta mer om sin förälders sjukdom. De yngre barnen rapporterade svårigheter både med att berätta om, och med att visa hur de själva mådde för någon i sin familj. De barn som deltog i FTI uppskattade strukturen och innehållet, de kände sig sedda, hörda och uppmärksammade under FTI, vilket skapade en känsla av tillit och trygghet.Alla barn blev lyssnade till och fick stöd att uttrycka både svårigheter och faktorer som kunde underlätta för dem. Under interventionen var det dock endast för ett fåtal barn som deras synpunkter och åsikter togs i beaktan, i enlighet med artikel 12 i barnkonventionen. De flesta barn rapporterade dock att FTI ökade kunskaperna om förälderns sjukdom och att det blev lättare att kommunicera med sina föräldrar. Genom sitt deltagande i FTI kunde barnen förbereda sig inför framtida sjukdomsrelaterade händelser, och hantering av konflikter underlättades.Resultatet visar att de behov barnen hade innan deltagande i FTI till stor del tillgodosågs under deltagandet. FTI innehar dock en struktur som ger föräldrarnas perspektiv större utrymme än barnens. Barnens perspektiv behöver således tas i beaktan i större utsträckning i syfte att det stöd som ges till dessa barn verkligen är till för dem. FTI tycks trots detta vara genomförbart och betydelsefullt för de barn som deltagit.
|
|
| 3. |
- Eriksson, Heléne, 1964-
(författare)
-
End of Life Stroke Care : perspectives of health-care professionals and family members
- 2019
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- IntroductionEven though medical improvements have reduced the mortality rates for patients afflicted by stroke, mortality during the first few days at hospital is significant. Today, there is an increasing recognition that the principles of palliative and supportive care are important components of meeting the needs of patients severely afflicted by stroke even in acute settings. However, there is limited knowledge about which factors have an impact on the end-of-life care (EoLC) for these patients or about how these last days of life are experienced from the family members’ perspective.AimThe overall aim of this thesis was to describe the EoLC of patients severely afflicted by stroke and to identify factors impacting upon EoLC for the patients and their family members in Sweden out of various contexts and methods.Design and MethodsThis thesis is based upon four papers employing qualitative, quantitative and mixed-method designs.Paper I is a qualitative study based on focus-group interviews with 41 health-care professionals (HCPs) in different professions related to stroke care at three stroke units. The aim was to study ethical dilemmas, different approaches and what consequences they had among health HCPs; the data was analysed using content analysis. The result inspired the design and conduct of the following studies.Paper II is a quantitative comparative study based on a retrospectively registered questionnaire from the Swedish Registry of Palliative Care (SRPC). Patients dying of stroke (n =1626) were compared with patients dying from cancer (n=1626), according to symptoms, symptom management and communication with the patient and family members during the last week of life. Data was statistically calculated using OR.Paper III is a mixed-method study employing a sequential explanatory design. In the first, quantitative, part, 995 stroke patients who died in hospital were compared with 631 stroke patients who died at nursing homes, according to symptoms, symptom management and communication with the patient and family members during the last week of life. The quantitative data was statistically calculated using OR and the qualitative data was analysed using content analysis. Nine significant differences drawn from the quantitative results regarding care were chosen to be discussed by twelve nurses working in stroke units.Paper IV is a qualitative interview study with the aim to study the family member descriptions of the trajectory from admission to the hospital until their loved one died. A semi-structured interview guide was used, and data was analysed using thematic analyses.ResultsFactors that had an impact on EoLC were consequences related to the difficulties around decision-making about withholding or withdrawing life-sustaining treatment. Non-decisions or not holding to the decision generated communication barriers causing obstacles in inter-professional collaboration and ethical dilemmas within the team (Study I). The absence of a mutual approach to care resulted in underprovided palliation, undignified medical treatment and ambiguity in care, generating feelings of distrust among the family members. The results described in Study I of underprovided palliation were further investigated in Study II. The differences in knowledge about whether symptoms were present or not in patients afflicted by stroke compared to patients with cancer were significant. For example, the HCPs in the stroke group did not know if pain was present nine times more frequently than in the cancer group. These differences in knowledge about whether symptoms were present of not were also identified in Study III. Here, HCPs at the nursing home more often had knowledge about whether a symptom was present in patients dying of stroke or not, compared to HCPs at hospitals. This study also identifies differences in the presence of the symptoms being compared and whether the patient’s suffering was fully relieved. The nurses working at stroke units explained that these differences were a consequence of the stroke unit’s aim (saving lives), no previous relationship to the patient and ambiguity in the evaluation of symptoms. The patient’s altered levels of consciousness increased the difficulties in evaluation. In addition, the hospital setting’s aim increased the risk of prolonged treatment, for example nutrition supplied during the last day of life, and underprovided palliation of for example, pain compared to nursing homes. In Study IV, family members were seeking trust through mutual collaboration and creating relationships with the HCPs. If the family did not feel that their search for trust was taken care of, it generated feelings of distrust allied with anxiety and memories of failing to do the best for their loved one at in the end of life. During the trajectory at the hospital, family members were “seeking trust in chaos”, “seeking clarity when deciding about living or dying” and finally they were “seeking trust in care as a final act of love”.Conclusions:The results of this thesis suggest that the absence of a coherent approach contributes to developing ethical dilemmas within the HCPs. The ambiguity in care had an impact on the quality on EoLC, with an increased risk of unnecessary suffering and questionable symptom management. The prevailing culture at acute-care hospitals affected the HCPs’ attitudes towards EoLC, with attention being predominantly on life-sustaining treatments. There is an increasing recognition of the need for improvement in the PC approach at acute-care hospitals in order to create equal quality of care during end of life, irrespective of the place of death for patients dying of stroke. Furthermore, family members need to feel trust, which is achieved through relationships and collaboration with HCPs. In the striving to accomplish a wholly compensatory care of quality during the trajectory, this thesis can be a source of knowledge and guidance for nurses and for teams at the stroke unit.
|
|
| 4. |
- Weber Falk, Megan
(författare)
-
Development and Evaluation of the Grief and Communication Family Support Intervention for Parentally Bereaved Families in Sweden
- 2020
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Each year in Sweden, approximately 6,900 children will have a parent diagnosed with cancer. Of all the children in Sweden born between 1990–1992, 5.6% have a parent with cancer and 1.1% of them have already had a parent die from cancer. Bereavement support is an important component in palliative care, which aims to alleviate the physical, psychological, and spiritual suffering of patients and their family members. Several, but not all families participating in the studies in this thesis came from a palliative care setting. Earlier research has shown that parentally bereaved children often experience psychological problems, physical problems, reduced self-esteem, difficulties communicating,school and behavioral problems, and/or complicated grief, with approximately 10% of parentally bereaved children experiencing some type of clinically significant psychological difficulty. Moreover, a child’s response to a parent’s death is often mediated by how their surviving parent responds to the loss. Still, support for bereaved children and families is limited in Sweden. The overall aim of this research project was to explore and describe psychological health, grief, and family communication among parentally bereaved children and surviving parents and to develop and evaluate a supportive family intervention. Four studies were conducted including an interview study exploring family communication in parentally bereaved families, a questionnaire study examining associations between family communication and psychological health in parentally bereaved children and adolescents, and the adaptation and evaluation of the Grief and Communication Family Support Intervention. Results from these four studies indicated that communication may be an important factor for adjustment following the death of a parent. Specifically, communication in some parentally bereaved families may involve conflict, which may in turn affect child and adolescent psychological health. Results from testing the Grief and Communication Family Support Intervention indicate that it may improve family communication and relationships. Testing the Grief and Communication Family Support Intervention with larger, more diverse samples is necessary to confirm these results. The results imply that helping families find ways to adjust and adapt in healthy ways following the death of a parent, potentially through the Grief and Communication Family Support Intervention, is likely to improve psychological health and communication among bereaved family members.
|
|
| 5. |
- Carlsson, Nina, 1979-
(författare)
-
Sorgereaktioner hos närstående till personer som avlidit till följd av plötsligt hjärtstopp
- 2022
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Syfte: Avhandlingens övergripande syfte var att utforska sorgereaktioner hos närstående till personer som avlidit till följd av plötsligt hjärtstopp. De specifika syftena var att: belysa innebörder av levda erfarenheter av att förlora en nära person som avlidit till följd av plötsligt hjärtstopp (I), beskriva symtom på förlängd sorg och självskattad hälsa hos närstående, samt att jämföra partners och icke-partners (II), undersöka samband mellan symtom på förlängd sorg och psykisk ohälsa samt identifiera associerade faktorer (III), undersöka sorgereaktioner i relation till socialt och professionellt stöd, sex och tolv månader efter förlusten (IV).Metod: Datainsamlingen genomfördes genom kvalitativa intervjuer (n=12) (I) samt via enkäter sex (n=108) (I-III) och tolv (n=69) (IV) månader efter dödfallet. Enkäterna innehöll bakgrundsfrågor samt mätinstrumenten: Prolonged Grief Disorder (PG-13), RAND-36, Health Index (HI), Minimal Insomnia Symptom Scale (MISS), Hospital Anxiety and Depression Scale (HADS), Posttraumatic Stress Disorder Checklist for DSM-5 (PCL-5), Multidimensional Scale of Perceived Social Support (MSPSS). Intervjudata analyserades utifrån fenomenologisk hermeneutik (I) och enkätdata analyserades med beskrivande och inferentiell statistik (II-IV).Resultat: Under hjärtstoppshändelsen befann sig närstående i ett gränsland mellan liv och död. Efter dödsfallet var närståendes berättande betydelsefullt i sökandet efter förståelse och mening. Att sakna svar kunde hålla kvar närstående i liminalitet och försvåra sorgeprocessen (I). Var femte närstående (18%) rapporterade symtom på förlängd sorg sex månader efter förlusten. Även symtom på ångest (30%) och depression (19%) var vanligt medan få rapporterade symtom på posttraumatisk stress (6%) (II). Dessa symtom samexisterade i hög grad (rs=0,69-0,79) (III) och kunde även kvarstå eller förvärras över tid (IV). Både socialt och professionellt stöd var signifikant associerat med symtom på förlängd sorg och psykisk ohälsa (III-IV). En majoritet (86%) rapporterade att de inte erbjudits stöd från hälso- och sjukvården vid dödsfallet (II).Slutsats: För att underlätta sorgeprocessen bör närstående erbjudas professionellt stöd under hjärtstoppshändelsen och uppföljande samtal efter dödfallet. Genom ett proaktivt professionellt stöd och användning av validerade mätinstrument kan närstående i behov av ytterligare psykologiskt stöd identifieras.
|
|
| 6. |
- Norinder, Maria
(författare)
-
A person-centred approach to support family caregivers in specialised home care : The Carer Support Needs Assessment Tool Intervention
- 2023
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Family caregivers are crucial providers of support and care for patients with lifethreatening illness and many report unmet support needs. With the use of quantitative and qualitative methods this thesis aimed to evaluate the Carer Support Needs Assessment Tool (CSNAT) and explore experiences and potential effects of utilising the Carer Support Needs Assessment Tool Intervention (CSNAT-I) among family caregivers and registered nurses in the context of specialised home care. The results showed that the CSNAT tool was valid and reliable for use among family caregivers in specialised home care (I). Family caregivers reported most the need for additional support concerning “Knowing what to expect in the future” (I, II). They reported and described how higher levels of need for more support were associated with poorer quality of life (II). The intervention was effective in significantly increasing family caregivers’ preparedness for caregiving (p = 0.002) (IV). Participating nurses expressed that their everyday clinical practice changed while learning to use the CSNAT-I and they experienced professional and personal growth (III). Their assessments and supportive inputs shifted from reactive towards proactive and more in collaboration with family caregivers. When utilizing the CSNAT-I, family caregivers experienced their conversations with nurses as co-created, providing new perspectives and insights which increased their involvement and helped in finding solutions (V).In conclusion, this thesis gives further weight to the importance of addressing family caregivers' support needs as a part of nursing.
|
|
| 7. |
- O'Sullivan, Anna
(författare)
-
Bereaved family members’ VOICES of support and care during the last three months of life for people with advanced illness
- 2021
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This thesis is in the subject of palliative care within the research field ‘The individual in the Welfare society’. The overall aim was to investigate bereaved family members’ experiences of support and care during the last three months of life for people with advanced illness. It encompasses four studies, in study I theVOICES (SF) (Views of Informal Carers – Evaluation of Services (Short Form))questionnaire was validated, and in studies II-IV a survey design was employed using VOICES (SF). The survey sample consisted of 485 bereaved family members (20-90 years old, 70.7% women) of people who had died in one of four hospitals, in two Swedish healthcare regions, between August 2016 and April 2017. VOICES (SF) was found feasible for use in a Swedish context in study I,however, the construct of some parts in the questionnaire was found not to be optimal when used in studies II-IV. Further development and validation is, therefore, recommended. The care place/care service was central for family members’ experiences of care and support. The importance of that the ill persons received care according to their needs was stressed, but the delivery of the care -with respect, dignity and empathy - was equally important. Most of the family members were satisfied with the care; however, about a fifth were not, indicating a need for improvement. The type of care, diagnosis, length of illness, educational attainment, and the relationship between the deceased person and the family member, influenced the experiences of care. This confirms that there are potential inequalities in care at the end of life. End-of-life communication and the support given to family members was not experienced as optimal. Family members expressed the importance of healthcare staff providing them with clear information, their own difficulties in recognising imminent death, and the value of a follow-up conversation with a healthcare professional who was present at the time of death. This thesis project has provided novel and important knowledge about the content and quality of care during the last few months of life, for all groups with potential palliative care needs, hence contributing to the discourse concerning quality of care at the end of life and placing care at the end of life on the agenda of the Swedish welfare society.
|
|
| 8. |
- Tegenborg, Sussi, 1968-
(författare)
-
Pain or no pain? That is the question : an evaluation of the observational pain assessment instrument Abbey Pain Scale in patients with cancer
- 2024
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: The Abbey Pain Scale (APS) is an observational pain assessment instrument that was created for use among patients with dementia. It is sometimes used in Sweden to assess pain in patients with advanced cancer who are unable to vocalize their pain, but it has never been evaluated in this population.Aim: To evaluate observational pain assessment for people with advanced cancer in a palliative care setting, focusing on the APS.Methods: The APS was translated and adapted into a Swedish dementia context through interviews with health care professionals (n=11). The resulting APS-SE was then used in a qualitative content analysis exploring health care professionals’ experience of using the instrument in patients with advanced cancer (n=12). The psychometrics of the APS-SE when used in patients with advanced cancer (n=72) were determined through test-retest and inter-rater reliability, internal consistency reliability, and responsiveness to opioids. Criterion validity was determined against the patients’ self-reported pain (n=45).Results: The APS-SE was comprehensible by users within dementia care, regardless of their educational and linguistic background. The qualitative analysis revealed that when used in patients with advanced cancer, the APS-SE fulfilled the need for an observational pain assessment instrument, but was not always on target and did not fully suit the clinical situation. The psychometric analysis showed slight criterion validity (κ=0.08) and unacceptable internal consistency reliability (Cronbach’s α=0.01). The test-retest reliability was good (ICC=0.82) and the inter-rater reliability moderate (ICC=0.64), but the latter had a confidence interval ranging from poor to good. Responsiveness to opioids was demonstrated (p=0.01).Conclusions: This thesis underscores the need for a specialized observational pain assessment instrument explicitly tailored for patients with advanced cancer. The current lack of a recognized alternative emphasizes the importance of developing such an instrument to address the critical gap in observational pain assessment in the palliative oncology setting.
|
|
