What to do when ‘there is nothing more to do’? A study within a salutogenic framework of family members' experience of palliative home care staff

2007 ◽  
Vol 16 (8) ◽  
pp. 741-751 ◽  
Author(s):  
A. Milberg ◽  
P. Strang
Keyword(s):  
Home Care ◽  
Family Members ◽  
Care Staff ◽  
Palliative Home Care

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.

Participants’ Experiences of a Support Group Intervention for Family Members during Ongoing Palliative Home Care

2005 ◽  
Vol 21 (4) ◽  
pp. 277-284 ◽  
Author(s):  
Anna Milberg ◽  
Kristina Rydstrand ◽  
Lena Helander ◽  
Maria Friedrichsen
Keyword(s):  
Home Care ◽  
Support Group ◽  
Group Intervention ◽  
Family Members ◽  
Palliative Home Care

scholarly journals Experiences of security and continuity of care: Patients' and families' narratives about the work of specialized palliative home care teams

2016 ◽  
Vol 15 (2) ◽  
pp. 181-189 ◽  
Author(s):  
Anna Klarare ◽  
Birgit H Rasmussen ◽  
Bjöörn Fossum ◽  
Carl Johan Fürst ◽  
Johan Hansson ◽  
...  
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Continuity Of Care ◽  
Service Providers ◽  
Family Members ◽  
Team Leaders ◽  
Palliative Home Care ◽  
Team Outcomes ◽  
Palliative Care Teams ◽  
The Individual

AbstractBackground:Those who are seriously ill and facing death are often living with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care.Objective:Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC).Method:A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes.Results:Two themes were constructed through thematic analysis: (1) security (“They are always available,” “I get the help I need quickly”); and (2) continuity of care (“They know me/us, our whole situation and they really care”). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions.Significance of results:Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.

What is a ‘secure base’ when death is approaching? A study applying attachment theory to adult patients' and family members' experiences of palliative home care

2011 ◽  
Vol 21 (8) ◽  
pp. 886-895 ◽  
Author(s):  
A. Milberg ◽  
R. Wåhlberg ◽  
M. Jakobsson ◽  
E-C. Olsson ◽  
M. Olsson ◽  
...  
Keyword(s):  
Home Care ◽  
Attachment Theory ◽  
Family Members ◽  
Adult Patients ◽  
Secure Base ◽  
Palliative Home Care

Patients' experiences of care and support at home after a family member's participation in an intervention during palliative care

2016 ◽  
Vol 15 (3) ◽  
pp. 305-312 ◽  
Author(s):  
Maria Norinder ◽  
Ida Goliath ◽  
Anette Alvariza
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Family Members ◽  
Psychoeducational Intervention ◽  
Interpretive Description ◽  
Palliative Home Care ◽  
Type Method ◽  
Care And Support ◽  
Positive Experiences ◽  
At Home

ABSTRACTObjective:Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care.Method:Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description.Results:Patients' experiences were represented by three themes: “safe at home,” “facilitated and more honest communication,” and “feeling like a unit of care.” Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals.Significance of results:Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

High Degree of Satisfaction With the Support Given by Multidisciplinary Palliative Home Care Teams in the County of Stockholm

2018 ◽  
Vol 33 (2) ◽  
pp. 109-114 ◽  
Author(s):  
Marie Nordström ◽  
Peter Strang
Keyword(s):  
Home Care ◽  
Care Service ◽  
Symptom Control ◽  
Family Members ◽  
Home Care Services ◽  
County Council ◽  
Shared Responsibility ◽  
Palliative Home Care ◽  
Care Services

Objective: At the initiative of Stockholm County Council, a survey was performed by an independent investigator to evaluate satisfaction among patients and their families with the advanced palliative home care teams in the county of Stockholm. The survey was performed in 2010 and compiled in 2011. The aim was to evaluate the impressions of patients and their families of the support given by the palliative home care teams in the Stockholm area and to evaluate the management of symptom control, availability, continuity, confidence, and quality of communication. Methods: A questionnaire was sent to 1424 patients and 329 family members to evaluate the views of the users of the home care service. Results: The response rate was 78% among both patients and their families or other caregivers. The proportion of positive and very positive responses among those who needed the specific help of the team was as follows: information about the service 86%, availability around the clock 96%, influence and feeling of shared responsibility 88%, and possibility of family members to have supportive discussions 95%. Eighty-three percent of patients experienced total pain relief and 99% total or partial relief. The corresponding figures for anxiety were 77% and 97% and for other symptom reliefs 79% and 98%, respectively. These figures were comparable to a smaller survey in 2014 and were high compared to the results from other medical services using similar questionnaires. Significance of the Results: A high quality of care is possible to achieve within palliative home care services.

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