The Family Talk Intervention in palliative home care when a parent with dependent children has a life-threatening illness: A feasibility study from parents’ perspectives

2020 ◽  
pp. 1-7 ◽  
Author(s):  
Anette Alvariza ◽  
Li Jalmsell ◽  
Rakel Eklund ◽  
Malin Lövgren ◽  
Ulrika Kreicbergs
Keyword(s):  
Home Care ◽  
Professional Competence ◽  
Qualitative Content Analysis ◽  
Open Communication ◽  
Palliative Home Care ◽  
Dependent Children ◽  
Disease Trajectory ◽  
Life Threatening Illness ◽  
The Family ◽  
Life Threatening

Abstract Objective One of the main goals of the Family Talk Intervention (FTI) is to increase communication within families with dependent children about illness-related consequences and to support parenting. FTI is family-centered and includes six manual-based meetings led by two interventionists. This study aims to evaluate the feasibility of the FTI in terms of acceptability from the perspective of parents in families with dependent children where one parent receives specialized palliative home care. Method A descriptive design employing mixed methods was used to evaluate the FTI in specialized palliative home care. In total, 29 parents participated in interviews and responded to a questionnaire following FTI. Qualitative content analysis and descriptive statistics were used for analyses. Results FTI responded to both the ill parent's and the healthy co-parent's expectations, and they recommended FTI to other families. Parents found the design of FTI to be well-structured and flexible according to their families’ needs. Many parents reported a wish for additional meetings and would have wanted FTI to start earlier in the disease trajectory. Parents also would have wished for a more thorough briefing with the interventionists to prepare before the start. The importance of the interventionists was acknowledged by the parents; their professional competence, engagement, and support were vital for finding ways to open communication within the family. The FTI meetings provided them with a setting to share thoughts and views. Parents clearly expressed that they would never have shared thoughts and feelings in a similar way without the meetings. Significance of results According to parents, FTI was found acceptable in a palliative home care context with the potential to add valuable support for families with minor children when a parent is suffering from a life-threatening illness.

scholarly journals Breaking the silence about illness and death: Potential effects of a pilot study of the family talk intervention when a parent with dependent children receives specialized palliative home care

2021 ◽  
pp. 1-7
Author(s):  
Megan Weber Falk ◽  
Rakel Eklund ◽  
Ulrika Kreicbergs ◽  
Anette Alvariza ◽  
Malin Lövgren
Keyword(s):  
Home Care ◽  
Family Relationships ◽  
Family Members ◽  
Family Coping ◽  
Open Communication ◽  
Entire Family ◽  
Palliative Home Care ◽  
Dependent Children ◽  
Palliative Care Setting ◽  
The Family

Abstract Objective The entire family is affected when a parent is severely ill. Parents often need and appreciate professional support when talking to children about illness and death. The family talk intervention (FTI) is family-centered and intends to promote communication about the illness and its consequences, support parenting to enhance family coping and help family members share experiences with each other to create a shared family history. This study aimed to explore potential effects of FTI in specialized palliative home care, as reported by parents. Method This pre-post test intervention pilot was conducted in specialized palliative home care. A convergent mixed-method design was used to analyze interview and questionnaire data. Twenty families with dependent children were recruited from two specialized palliative home care units in Stockholm, Sweden. Results Parents reported that family communication improved after participation in FTI as family members learned communication strategies that facilitated open sharing of thoughts and feelings. Increased open communication helped family members gain a better understanding of each other's perspectives. Parents reported that relationships with their partner and children had improved as they now shared several strategies for maintaining family relationships. Parents were also less worried following participation in FTI. The ill parents stated that they gained a sense of security and were less worried about the future. Significance of results This study adds to the evidence that FTI may be a useful intervention for families with dependent children and an ill parent in a palliative care setting. This trial is registered at ClinicalTrials.gov Identifier NCT03119545.

Children’s Self-Reports About Illness-Related Information and Family Communication When a Parent Has a Life-Threatening Illness

2020 ◽  
Vol 26 (2) ◽  
pp. 102-110 ◽  
Author(s):  
Rakel Eklund ◽  
Ulrika Kreicbergs ◽  
Anette Alvariza ◽  
Malin Lövgren
Keyword(s):  
Home Care ◽  
Family Communication ◽  
Professional Communication ◽  
Family Interventions ◽  
Palliative Home Care ◽  
Related Information ◽  
Life Threatening Illness ◽  
The Family ◽  
Self Reports ◽  
Life Threatening

Children’s experiences of information and family communication when a parent has a life-threatening illness have been sparsely studied, though such information is important for the child’s wellbeing. The aim of this study was to explore children’s reports of illness-related information and family communication when living with a parent with a life-threatening illness. Forty-eight children, aged 7 to 19 years, were recruited from four specialized palliative home care units in Stockholm, Sweden. All but one child reported that someone had told them about the parent’s life-threatening illness; however, two thirds wanted more information. A quarter of the teenagers reported that they had questions about the illness that they did not dare to ask. Half of the children, aged 8 to 12, reported that they felt partially or completely unable to talk about how they felt or show their feelings to someone in the family. Interventions are needed that promote greater family communication and family–professional communication.

scholarly journals Higher levels of unmet support needs in spouses are associated with poorer quality of life – a descriptive cross-sectional study in the context of palliative home care

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Maria Norinder ◽  
Kristofer Årestedt ◽  
Susanne Lind ◽  
Lena Axelsson ◽  
Gunn Grande ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Home Care ◽  
Family Caregivers ◽  
Emotional Health ◽  
Support Needs ◽  
Cross Sectional ◽  
Palliative Home Care ◽  
Life Threatening Illness ◽  
Life Threatening

Abstract Background Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers’ support needs and quality of life when caring for a spouse receiving specialized palliative home care. Methods A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness – Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses. Results Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient’s life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient’s condition, and the family caregiver’s own physical and emotional health. Conclusion With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers’ QoL by revealing their problems and concerns. Thus, tailored support is needed.

Communicating with children when a parent is dying

2017 ◽  
Author(s):  
Cynthia W. Moore ◽  
Paula K. Rauch
Keyword(s):  
Child Development ◽  
Developmental Stage ◽  
Open Communication ◽  
Dependent Children ◽  
Life Threatening Illness ◽  
Parents And Children ◽  
Different Ages ◽  
Life Threatening ◽  
Communicating With Children

Concerns about dependent children are prominent, and distressing, for parents diagnosed with a life-threatening illness. Helping parents feel prepared to talk with children about their illness and possible death, at any stage of illness, has the potential to alleviate distress in both parents and children. This chapter provides a summary of how children at different ages understand and respond to a death, and offers suggestions about how clinicians can support parents’ open communication with their children about illness and death, based on the child’s developmental stage, and phase of illness and treatment. Clinicians can start by making the effort to ask parents about their children, to learn a bit about child development, and to identify or create some resources for these families.

Availability as key determinant in the palliative home care setting from the patients’ and family caregivers’ perspectives: A quantitative-qualitative-content analysis approach

2020 ◽  
pp. 1-10
Author(s):  
Kim Dillen ◽  
Melanie Joshi ◽  
Norbert Krumm ◽  
Michaela Hesse ◽  
Holger Brunsch ◽  
...  
Keyword(s):  
Home Care ◽  
Family Caregivers ◽  
Professional Competence ◽  
Factor Model ◽  
Qualitative Content Analysis ◽  
Structured Interview ◽  
Patient Centeredness ◽  
Palliative Home Care ◽  
Sense Of Security ◽  
Three Factor

Abstract Objective A sense of security is important in palliative home care. Yet, knowledge about which components contribute most to feeling secure from the patients’ and family caregivers’ perspectives, especially since the introduction of specialist palliative home care, is sparse. The goal of the current study was to determine the key components contributing to a sense of security and how they relate to each other as experienced by patients and family caregivers in specialist and generalist palliative home care. Methods The current sub-study, as part of a larger study, was performed in different regions in Germany. Palliative care patients and family caregivers of at least 18 years of age, being cared for at home were interviewed using semi-structured interview guides following a three-factor model and analyzed by using a combined quantitative-qualitative-content approach. Results One hundred and ninty-seven patients and 10 carers completed interviews between December 2017 and April 2019. The majority of patients were diagnosed with an oncological disease. Sense of security was mentioned particularly often suggesting its high relevance. We identified nine subcategories that were all mentioned more frequently by specialist than generalist palliative home care recipients in the following order of priority and relation: (i) patient-centeredness: availability, provision of information/education, professional competence, patient empowerment, and trust (ii) organizational work: comprehensive responsibility, external collaboration, and internal cooperation, and (iii) direct communication. Significance of results The work of specialist palliative home care services in particular was perceived as very effective and beneficial. Our findings confirm a previously developed three-factor model allowing for generalizability and revealed that availability was most important for improving the sense of security for effective palliative home care.

scholarly journals Children’s experiences of the family talk intervention when a parent is cared for in palliative home care—A feasibility study

Death Studies ◽  
2020 ◽  
pp. 1-12
Author(s):  
Rakel Eklund ◽  
Li Jalmsell ◽  
Ulrika Kreicbergs ◽  
Anette Alvariza ◽  
Malin Lövgren
Keyword(s):  
Home Care ◽  
Feasibility Study ◽  
Palliative Home Care ◽  
The Family

scholarly journals ‘It felt like a black hole, great uncertainty, but we have to take care for our patients’–Qualitative findings on the effects of the COVID-19 pandemic on specialist palliative home care

PLoS ONE ◽  
2021 ◽  
Vol 16 (12) ◽  
pp. e0260767
Author(s):  
Maximiliane Jansky ◽  
Franziska Schade ◽  
Nicola Rieder ◽  
Danica Lohrmann ◽  
Cordula Gebel ◽  
...  
Keyword(s):  
Home Care ◽  
Information Management ◽  
Qualitative Content Analysis ◽  
Health Care Systems ◽  
Quality Care ◽  
Multidisciplinary Teams ◽  
Local Health ◽  
Health Providers ◽  
Local Networks ◽  
Palliative Home Care

Background The COVID-19 pandemic has affected health care systems worldwide. Multidisciplinary teams provide specialist palliative home care (SPHC) for patients with incurable, severe, progressive diseases. These patients are at the same time at high risk, if infected, highly constricted by containment measures, and dependent on support. Aim To explore i) how German SPHC teams were affected by the pandemic during the first wave, ii) which challenges they faced, and iii) which strategies helped to handle the consequences of the COVID-19 pandemic for providing good SPHC. Method Four focus groups (with representatives of 18 SPHC teams) and five guided interviews with stakeholders were conducted and analysed using qualitative content analysis. Results Seven key categories emerged from the data. A category in the background describes dependence on organizational characteristics (e.g. sponsorship), which varied by regional factors. Information management was a challenge to SPHC teams, as they had to collect, interpret and adapt, and disseminate information. They reported a shift in patient care because of the COVID-19 pandemic, due to restricted home visits, visitation ban in nursing homes, and difficulties for hospital, hospice and nursing home admissions. Measures to reduce risk of infection impeded teamwork. Teams relied upon their local networks in crisis management, but felt often overlooked by local health authorities. Their respective SPHC state associations supported them in information management and exchange. Discussion The pandemic has severely impacted home care for especially vulnerable seriously ill and dying people. A good network with local health providers and authorities could help to harmonize local regulations and ensure quality care for all patient groups. SPHC teams could play an important role in caring for palliative patients with COVID-19 who are not admitted to a hospital due to preferences or resources.

scholarly journals Impact on place of death in cancer patients: a causal exploration in southern Switzerland

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Heidi Kern ◽  
Giorgio Corani ◽  
David Huber ◽  
Nicola Vermes ◽  
Marco Zaffalon ◽  
...  
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Expert Knowledge ◽  
Place Of Death ◽  
Data Mining Algorithm ◽  
Open Communication ◽  
Data Set ◽  
Palliative Home Care ◽  
At Home

Abstract Background Most terminally ill cancer patients prefer to die at home, but a majority die in institutional settings. Research questions about this discrepancy have not been fully answered. This study applies artificial intelligence and machine learning techniques to explore the complex network of factors and the cause-effect relationships affecting the place of death, with the ultimate aim of developing policies favouring home-based end-of-life care. Methods A data mining algorithm and a causal probabilistic model for data analysis were developed with information derived from expert knowledge that was merged with data from 116 deceased cancer patients in southern Switzerland. This data set was obtained via a retrospective clinical chart review. Results Dependencies of disease and treatment-related decisions demonstrate an influence on the place of death of 13%. Anticancer treatment in advanced disease prevents or delays communication about the end of life between oncologists, patients and families. Unknown preferences for the place of death represent a great barrier to a home death. A further barrier is the limited availability of family caregivers for terminal home care. The family’s preference for the last place of care has a high impact on the place of death of 51%, while the influence of the patient’s preference is low, at 14%. Approximately one-third of family systems can be empowered by health care professionals to provide home care through open end-of-life communication and good symptom management. Such intervention has an influence on the place of death of 17%. If families express a convincing preference for home care, the involvement of a specialist palliative home care service can increase the probability of home deaths by 24%. Conclusion Concerning death at home, open communication about death and dying is essential. Furthermore, for the patient preference for home care to be respected, the family’s decision for the last place of care seems to be key. The early initiation of family-centred palliative care and the provision of specialist palliative home care for patients who wish to die at home are suggested.

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