Skip header and navigation

Refine By

15 records – page 1 of 2.

Adaptation and validation of the VOICES (SF) questionnaire - for evaluation of end-of-life care in Sweden.

https://arctichealth.org/en/permalink/ahliterature298130
Source
Scand J Caring Sci. 2018 Sep; 32(3):1254-1260
Publication Type
Journal Article
Date
Sep-2018
Author
Anna O'Sullivan
Joakim Öhlen
Anette Alvariza
Cecilia Håkanson
Author Affiliation
Palliative Research Centre, Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Stockholm, Sweden.
Source
Scand J Caring Sci. 2018 Sep; 32(3):1254-1260
Date
Sep-2018
Language
English
Publication Type
Journal Article
Keywords
Adult
Aged
Aged, 80 and over
Bereavement
Caregivers - psychology
Family - psychology
Female
Humans
Male
Middle Aged
Psychometrics
Reproducibility of Results
Surveys and Questionnaires
Sweden
Terminal Care - psychology
Translations
Young Adult
Abstract
Instruments for evaluating end-of-life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end-of-life care in Sweden. The VOICES (SF) [Views of Informal Carers - Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member.
This study was performed based on translation and back translation, cross-cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life-limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording.
The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable.
The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross-national comparisons between different healthcare places and organisations.
PubMed ID
29148073 View in PubMed
Less detail

Bereavement stressors and psychosocial well-being of young adults following the loss of a parent - A cross-sectional survey.

https://arctichealth.org/en/permalink/ahliterature295577
Source
Eur J Oncol Nurs. 2018 Aug; 35:33-38
Publication Type
Journal Article
Date
Aug-2018
Author
Tina Lundberg
Ulla Forinder
Mariann Olsson
Carl Johan Fürst
Kristofer Årestedt
Anette Alvariza
Author Affiliation
Department of Neurobiology, Care Sciences and Society/Division of Social Work, Karolinska Institutet, 141 83, Huddinge, Sweden; Department of Health Care Sciences/Palliative Research Centre, Ersta Sköndal Bräcke University College, Box 11189, 100 61, Stockholm, Sweden; Function Area in Social Work and Health, Karolinska University Hospital, 171 76, Stockholm, Sweden. Electronic address: tina.lundberg@esh.se.
Source
Eur J Oncol Nurs. 2018 Aug; 35:33-38
Date
Aug-2018
Language
English
Publication Type
Journal Article
Keywords
Adaptation, Psychological
Adolescent
Adult
Adult Children - psychology
Bereavement
Cross-Sectional Studies
Female
Grief
Humans
Longitudinal Studies
Male
Neoplasms - mortality - psychology
Parents
Surveys and Questionnaires
Sweden
Young Adult
Abstract
The knowledge about young adults who have lost a parent to cancer is limited, and to reach a broader understanding about this group, this study used the Dual Process Model of Coping with Bereavement (Stroebe and Schut, 1999) as a theoretical framework. The purpose of this study was to describe loss- and restoration-oriented bereavement stressors and psychosocial wellbeing of young adults following the loss of a parent to cancer.
This survey used baseline data from a longitudinal study. Young adults, aged 16-28 years, who lost a parent to cancer more than two months earlier and agreed to participate in support groups held at three palliative care services in Sweden, responded to a comprehensive theory-based study-specific questionnaire.
Altogether, 77 young adults (64 women and 13 men) answered the questionnaire an average of five-to-eight months after the loss. Twenty percent (n?=?15) had not been aware of their parent's impending death at all or only knew a few hours before the death, and 65% (n?=?50) did not expect the death when it occurred. The young adults reported low self-esteem (n?=?58, 76%), mild to severe anxiety (n?=?55, 74%), mild to severe depression (n?=?23, 31%) and low life satisfaction.
Young adults reported overall poor psychosocial wellbeing following bereavement. The unexpectedness and unawareness of the parent's imminent death, i.e., loss-oriented bereavement stressors, might influence psychosocial wellbeing. Despite these reports, restoration-oriented stressors, such as support from family and friends, helped them to cope with the loss.
PubMed ID
30057081 View in PubMed
Less detail

Characteristics of the Family Caregivers Who Did Not Benefit From a Successful Psychoeducational Group Intervention During Palliative Cancer Care: A Prospective Correlational Study.

https://arctichealth.org/en/permalink/ahliterature284811
Source
Cancer Nurs. 2017 Jan/Feb;40(1):76-83
Publication Type
Article
Author
Maja Holm
Kristofer Årestedt
Ida Carlander
Yvonne Wengström
Joakim Öhlen
Anette Alvariza
Source
Cancer Nurs. 2017 Jan/Feb;40(1):76-83
Language
English
Publication Type
Article
Keywords
Aged
Caregivers - education - psychology - statistics & numerical data
Female
Humans
Male
Middle Aged
Neoplasms - psychology - therapy
Palliative Care
Prospective Studies
Psychotherapy, Group
Surveys and Questionnaires
Sweden
Treatment Outcome
Abstract
Although there has been a steady increase in intervention studies aimed toward supporting family caregivers in palliative cancer care, they often report modest effect sizes and there is a lack of knowledge about possible barriers to intervention effectiveness.
The aim of this study is to explore the characteristics of family caregivers who did not benefit from a successful psychoeducational group intervention compared with the characteristics of those who did.
A psychoeducational intervention for family caregivers was delivered at 10 palliative settings in Sweden. Questionnaires were used to collect data at baseline and following the intervention. The Preparedness for Caregiving Scale was the main outcome for the study and was used to decide whether or not the family caregiver had benefited from the intervention (Preparedness for Caregiving Scale difference score = 0 vs = 1).
A total of 82 family caregivers completed the intervention and follow-up. Caregivers who did not benefit from the intervention had significantly higher ratings of their preparedness and competence for caregiving and their health at baseline compared with the group who benefited. They also experienced lower levels of environmental burden and a trend toward fewer symptoms of depression.
Family caregivers who did not benefit from the intervention tended to be less vulnerable at baseline. Hence, the potential to improve their ratings was smaller than for the group who did benefit.
Determining family caregivers in cancer and palliative care who are more likely to benefit from an intervention needs to be explored further in research.
PubMed ID
26925988 View in PubMed
Less detail

The family talk intervention for families when a parent is cared for in palliative care - potential effects from minor children's perspectives.

https://arctichealth.org/en/permalink/ahliterature306209
Source
BMC Palliat Care. 2020 Apr 16; 19(1):50
Publication Type
Journal Article
Date
Apr-16-2020
Author
Rakel Eklund
Anette Alvariza
Ulrika Kreicbergs
Li Jalmsell
Malin Lövgren
Author Affiliation
Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University College, Box 11189, 100 61, Stockholm, Sweden. rakel.eklund@esh.se.
Source
BMC Palliat Care. 2020 Apr 16; 19(1):50
Date
Apr-16-2020
Language
English
Publication Type
Journal Article
Keywords
Adaptation, Psychological
Adolescent
Child
Family - psychology
Female
Humans
Interviews as Topic - methods
Male
Palliative Care - methods - psychology
Parents
Pilot Projects
Professional-Patient Relations
Social Support
Surveys and Questionnaires
Sweden
Young Adult
Abstract
Children show long-term psychological distress if family communication and illness-related information are poor during and after a parent's illness and death. Few psychosocial interventions for families with minor children living with a parent who has a life-threatening illness have been evaluated rigorously. Even fewer interventions have been family-centered. One exception is the Family Talk Intervention (FTI), which has shown promising results regarding increased illness-related knowledge and improved family communication. However, FTI has not yet been evaluated in palliative care. This study therefore aimed to explore the potential effects of FTI from the perspectives of minor children whose parent is cared for in specialized palliative home care.
This pilot intervention study involves questionnaire and interview data collected from children after participation in FTI. Families were recruited from two specialized palliative home care units. To be included, families must include one parent with life-threatening illness, at least one child aged 6-19?years, and understand and speak Swedish. Twenty families with a total of 34 children participated in FTI; 23 children answered the questionnaire, and 22 were interviewed after participation.
The children reported that FTI increased their knowledge about their parents' illness. They said the interventionist helped them to handle school-related problems, establish professional counselling, and find strength to maintain everyday life. Children aged 8-12 reported that talking with their parents became easier after FTI, whereas communication was unchanged for teenagers and between siblings. Children also reported having been helped to prepare for the future, and that they benefitted from advice about how to maintain everyday life and minimize conflicts within the family.
Children who participated in FTI reported that it was helpful in many ways, providing illness-related information and improving family communication when a parent has a life-threatening illness. Other potential positive effects reported by the children were that FTI facilitated their preparation for the future, decreased family conflicts, and started to build up resilience.
ClinicalTrials.gov, Identifier NCT03119545, retrospectively registered 18 April 2017.
PubMed ID
32299420 View in PubMed
Less detail

Health and Social Service Access Among Family Caregivers of People with Parkinson's Disease.

https://arctichealth.org/en/permalink/ahliterature287072
Source
J Parkinsons Dis. 2016 May 11;6(3):581-7
Publication Type
Article
Date
May-11-2016
Author
Yvonne Olsson
Lena Clarén
Anette Alvariza
Kristofer Årestedt
Peter Hagell
Source
J Parkinsons Dis. 2016 May 11;6(3):581-7
Date
May-11-2016
Language
English
Publication Type
Article
Keywords
Adult
Aged
Aged, 80 and over
Caregivers - statistics & numerical data
Cross-Sectional Studies
Female
Health Services Accessibility - statistics & numerical data
Health status
Humans
Male
Middle Aged
Parkinson Disease - nursing
Social Work - statistics & numerical data
Sweden
Abstract
Being a family caregiver for a person with Parkinson's disease (PD) can negatively impact health and wellbeing, but it appears less clear to what extent caregivers' health/social service needs are met.
We explored the extent to which PD family caregivers experience sufficient access to health/social services, as compared to age-matched controls; and the associations between this and demographic and health-related variables.
A cross-sectional survey of 66 PD family caregivers and 79 age-matched control subjects including the SF-36 health survey, the Nottingham Health Profile Sleep section (NHP-Sleep), and questions regarding contacts with various health/social related services and whether these were perceived as sufficient.
People reporting insufficient access (n?=?29) were more often PD family caregivers than controls (83% vs. 37%), did more often have a disease of their own (79% vs. 46%), and reported poorer health according to the SF-36 and the NHP-Sleep. Being a PD family caregiver (OR, 8.90), reporting more pain (OR, 1.02) and having an own disease (OR, 3.46) were independently associated with insufficient health/social service access.
Our results imply that those in greatest need for health/social services (i.e., those with poorer health, an own disease, and who are PD family caregivers) are those whose health/social service needs are least met. Larger studies are needed for firmer conclusions and regarding how unmet health/social service needs impacts caregiver health and wellbeing. Health/social service providers should not only focus on patients but also consider their family members' needs.
PubMed ID
27176624 View in PubMed
Less detail

How to support teenagers who are losing a parent to cancer: Bereaved young adults' advice to healthcare professionals-A nationwide survey.

https://arctichealth.org/en/permalink/ahliterature291506
Source
Palliat Support Care. 2017 Jun; 15(3):313-319
Publication Type
Journal Article
Date
Jun-2017
Author
Anette Alvariza
Malin Lövgren
Tove Bylund-Grenklo
Pia Hakola
Carl Johan Fürst
Ulrika Kreicbergs
Author Affiliation
Department of Healthcare Sciences,Palliative Research Centre, Ersta Sköndal University College,Stockholm,Sweden.
Source
Palliat Support Care. 2017 Jun; 15(3):313-319
Date
Jun-2017
Language
English
Publication Type
Journal Article
Keywords
Adaptation, Psychological
Adolescent
Adolescent Behavior - psychology
Attitude to Death
Communication
Female
Humans
Male
Neoplasms - mortality - psychology
Parents
Social Support
Surveys and Questionnaires
Sweden
Abstract
The loss of a parent to cancer is considered one of the most traumatic events a teenager can experience. Studies have shown that teenagers, from the time of diagnosis, are already extremely worried about the consequences of a parent's cancer but tend to be left to manage these concerns on their own. The present study aimed to explore young adults' advice to healthcare professionals on how to support teenagers who are losing a parent to cancer.
This work derives from a Swedish nationwide survey and employs a qualitative approach with a descriptive/interpretive design to obtain answers to an open-ended question concerning advice to healthcare professionals. Of the 851 eligible young adults who had lost a parent to cancer when they were 13-16 years of age within the previous 6 to 9 years, 622 participated in our survey (response rate = 73%). Of these 622 young adults, 481 responded to the open-ended question about what advice to give healthcare professionals.
Four themes emerged: (1) to be seen and acknowledged; (2) to understand and prepare for illness, treatment, and the impending death; (3) to spend time with the ill parent, and (4) to receive support tailored to the individual teenager's needs.
This nationwide study contributes hands-on suggestions to healthcare staff regarding attitudes, communication, and support from the perspective of young adults who, in their teenage years, lost a parent to cancer. Teenagers may feel better supported during a parent's illness if healthcare professionals take this manageable advice forward into practice and see each teenager as individuals; explain the disease, its treatments, and consequences; encourage teenagers to spend time with their ill parent; and recommend sources of support.
PubMed ID
27692012 View in PubMed
Less detail

Leading an intervention for family caregivers-a part of nursing in palliative care.

https://arctichealth.org/en/permalink/ahliterature283439
Source
Int J Palliat Nurs. 2017 Apr 02;23(4):166-172
Publication Type
Article
Date
Apr-02-2017
Author
Maja Holm
Ida Goliath
Hanna Södlind
Anette Alvariza
Source
Int J Palliat Nurs. 2017 Apr 02;23(4):166-172
Date
Apr-02-2017
Language
English
Publication Type
Article
Keywords
Adult
Attitude of Health Personnel
Caregivers
Female
Hospice and Palliative Care Nursing
Humans
Leadership
Middle Aged
Narration
Nurse's Role
Nurses
Practice Patterns, Nurses'
Qualitative Research
Sweden
Abstract
Professional leadership has been highlighted as an important part of successful intervention delivery. The aim of this study is to explore the narratives of nurses involved in leading a group intervention for family caregivers in palliative care. Nurses were interviewed about their experiences as group leaders in a psycho-educational group intervention, which was delivered at 10 specialised palliative home care settings, with the help of an intervention manual. Data were analysed with interpretive descriptive methodology. Three themes were identified in the analysis: embracing the leading role, developing qualities as a group leader, and professional and personal development. The results showed that the role as group leader initially was a challenge for the nurses, but that they gradually were able to develop the professional and personal skills that were required. The nurses believed that their profession was best suited to lead this kind of supportive intervention.
PubMed ID
28486067 View in PubMed
Less detail

Measuring quality of life in life-threatening illness - content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers.

https://arctichealth.org/en/permalink/ahliterature306433
Source
BMC Palliat Care. 2020 Mar 25; 19(1):40
Publication Type
Journal Article
Date
Mar-25-2020
Author
Lena Axelsson
Anette Alvariza
Nina Carlsson
S Robin Cohen
Richard Sawatzky
Kristofer Årestedt
Author Affiliation
Department of Nursing Science, Sophiahemmet University, Box 5605, 114 86, Stockholm, Sweden. lena.axelsson@shh.se.
Source
BMC Palliat Care. 2020 Mar 25; 19(1):40
Date
Mar-25-2020
Language
English
Publication Type
Journal Article
Keywords
Adult
Caregivers - psychology - statistics & numerical data
Female
Humans
Interviews as Topic - methods
Male
Middle Aged
Patients - psychology - statistics & numerical data
Psychometrics - instrumentation - methods - statistics & numerical data
Quality of Life - psychology
Reproducibility of Results
Surveys and Questionnaires
Sweden
Translating
Abstract
The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers.
The study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care.
Patients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings.
The results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.
PubMed ID
32213170 View in PubMed
Less detail

A Nationwide Study of Young Adults' Perspectives on Participation in Bereavement Research.

https://arctichealth.org/en/permalink/ahliterature310641
Source
J Palliat Med. 2019 10; 22(10):1271-1273
Publication Type
Journal Article
Date
10-2019
Author
Camilla Udo
Malin Lövgren
Josefin Sveen
Tove Bylund-Grenklo
Anette Alvariza
Ulrika Kreicbergs
Author Affiliation
School of Education, Health, and Social Studies, Dalarna University, Falun, Sweden.
Source
J Palliat Med. 2019 10; 22(10):1271-1273
Date
10-2019
Language
English
Publication Type
Journal Article
Keywords
Adolescent
Attitude to Death
Bereavement
Female
Humans
Male
Neoplasms - mortality
Research Subjects
Surveys and Questionnaires
Sweden
Young Adult
Abstract
Background: Young adults represent a minority in research; they are often considered too young or too old for participation. There is sparse information, especially in bereavement research, regarding how this age group perceives research participation and what they consider beneficial or harmful. Aim: To explore how parentally bereaved and nonbereaved young adults perceive research participation. Design: Qualitative analysis of free-text comments collected in a Swedish nation-wide survey. Setting/Participants: Parentally cancer-bereaved and nonbereaved young adults between 18 and 25 years old living in Sweden. Results: Five categories were identified from the free-text comments, three among the cancer-bereaved: (1) therapeutic to remember the deceased, (2) valuable to help others and improve care, and (3) short-term distressful-long-term beneficial, and two among the nonbereaved: (1) increased reflection and awareness about life, and (2) an opportunity to help others. Conclusions: It is important to invite young adults to participate in bereavement research. The results suggest that potential harm is minimal and that participating in bereavement research can have a beneficial effect on young adults.
PubMed ID
30892140 View in PubMed
Less detail

Palliative care during the final week of life of older people in nursing homes: A register-based study.

https://arctichealth.org/en/permalink/ahliterature291647
Source
Palliat Support Care. 2017 Aug; 15(4):417-424
Publication Type
Journal Article
Date
Aug-2017
Author
Jonas Smedbäck
Joakim Öhlén
Kristofer Årestedt
Anette Alvariza
Carl-Johan Fürst
Cecilia Håkanson
Author Affiliation
Department of Health Care Sciences,Ersta Sköndal University College,Stockholm,Sweden.
Source
Palliat Support Care. 2017 Aug; 15(4):417-424
Date
Aug-2017
Language
English
Publication Type
Journal Article
Keywords
Aged
Aged, 80 and over
Confusion - complications
Dyspnea - complications
Female
Humans
Male
Middle Aged
Nausea - complications
Nursing Homes - organization & administration - standards - statistics & numerical data
Pain - complications
Palliative Care - methods - standards - statistics & numerical data
Prevalence
Quality of Health Care - standards
Quality of Life - psychology
Registries - statistics & numerical data
Sweden
Syndrome
Terminal Care - methods - standards - statistics & numerical data
Time Factors
Abstract
Our aim was to explore the presence of symptoms, symptom relief, and other key aspects of palliative care during the final week of life among older people residing in nursing homes.
Our study employed data from the Swedish Palliative Care Register on all registered individuals aged 60 and older who had died in nursing homes during the years 2011 and 2012. Variables pertaining to monitoring and treatment of symptoms, end-of-life discussions, circumstances around the death, and the individual characteristics of deceased individuals were explored using descriptive statistics.
The most common underlying causes of death among the 49,172 deceased nursing home residents were circulatory diseases (42.2%) and dementia (22.7%). The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%), and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1 and 4.3% of all individuals, respectively. The use of valid instruments for symptom assessment was reported for pain in 12.3% and for other symptoms in 7.8% of subjects. The most prevalent individual prescriptions for injection PRN (pro re nata, according to circumstances) were for pain treatment (79.5%) and rattles (72.8%). End-of-life discussions were performed with 27.3% of all the deceased individuals and with 53.9% of their relatives. Of all individuals, 82.1% had someone present at death, and 15.8% died alone. Of all the nursing home resident deaths recorded, 45.3% died in their preferred place.
There were large variations in degree of relief from different symptoms during the final week of life. Pain was the most prevalent symptom, and it was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also less well-relieved. Our results indicate a need for improvement of palliative care in nursing home settings, focusing on management of distressing symptoms and promotion of end-of-life discussions.
PubMed ID
28049547 View in PubMed
Less detail

15 records – page 1 of 2.