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Alvariza, A., Mjörnberg, M. & Goliath, I. (2020). Palliative care nurses' strategies when working in private homes: A photo-elicitation study. Journal of Clinical Nursing, 29(1-2), 139-151
Open this publication in new window or tab >>Palliative care nurses' strategies when working in private homes: A photo-elicitation study
2020 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 29, no 1-2, p. 139-151Article in journal (Refereed) Published
Abstract [en]

AIMS AND OBJECTIVES: To explore palliative care nurses' work experiences caring for patients at the end of life in private homes.

BACKGROUND: The home continues to be a desired place for care and dying; however, professional competence is needed and specialist palliative care nurses play a crucial role, often highly valued by patients and their family members. The private home as a physical work environment for nurses is explored, with both positive and negative aspects being described. To ensure future high-quality end-of-life care, there is a need to describe how palliative care nurses work in private homes.

DESIGN: Interpretative descriptive.

METHODS: Participant-generated photographs were used in conjunction with follow-up interviews with ten palliative home care nurses. Interpretive description was used for analysis. This study follows the COREQ checklist.

RESULTS: The analysis process resulted in four constructed themes, presented here as strategies used by palliative care nurses: adjusting interactions and actions depending on the environment when entering each unique private home; supporting patients and family members in finding a balance between self-care, independence and safe care; guiding patients and family members towards and through environmental changes supporting end-of-life care at home; and using transitions between homes to reflect, recuperate and prepare.

CONCLUSION: Working as a palliative care nurse in private homes clearly requires a variety of skills and competences, here operationalised in different strategies used to promote high-quality care.

RELEVANCE TO CLINICAL PRACTICE: Palliative care nurses' considerations, insights and competence when performing end-of-life care in the diverse environments of private homes can contribute to the development of clinical practice. Knowledge about strategies can be used in nursing practice during everyday work, in nursing education and in the organisation of care, and can inform policy to ensure future high-quality palliative home care.

Keywords
Care activities, End of life care, Interpretative research, Interviews, Nurse, Nursing home care, Palliative care, Qualitative approaches
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-8207 (URN)10.1111/jocn.15072 (DOI)31535417 (PubMedID)
Available from: 2020-06-11 Created: 2020-06-11 Last updated: 2023-02-07Bibliographically approved
Cleeve, H., Tishelman, C., Macdonald, A., Lindqvist, O. & Goliath, I. (2018). Not just things: The roles of objects at the end of life.. Sociology of Health and Illness, 40(4), 735-749
Open this publication in new window or tab >>Not just things: The roles of objects at the end of life.
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2018 (English)In: Sociology of Health and Illness, ISSN 0141-9889, E-ISSN 1467-9566, Vol. 40, no 4, p. 735-749Article in journal (Refereed) Published
Abstract [en]

While the study of objects in care contexts is an emerging research field, it is largely overlooked in end of life (EoL) care. In this study, we empirically and inductively explore the roles of objects at the EoL from the perspective of bereaved family members. Open individual interviews were conducted with 25 family members recruited from palliative in-patient and homecare units, as well as residential care facilities. After verbatim transcription, the interviews were analysed thematically. Based on these interviews, we conceptualise the roles of objects as relating to temporality, transformations of the everyday, and care. Through analysis we offer two main insights, the first relating to interdependency between objects and people, and the second to the recognition of objects as simultaneously flexible and stable in this interdependent relationship. The capacity and challenge of objects as part of EoL care lies in their ability to encompass various viewpoints and relationships simultaneously. This might provide valuable insights for staff caring for dying persons and their families. We propose that staff's ability to navigate objects in care practices could be meaningful in supporting the relationships between individuals in EoL situations.

Keywords
Death and dying, End-of-life care, Family members, Objects, Relationships
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-6713 (URN)10.1111/1467-9566.12719 (DOI)29480548 (PubMedID)
Available from: 2018-04-09 Created: 2018-04-09 Last updated: 2023-10-24Bibliographically approved
Henoch, I., Carlander (Goliath), I., Holm, M., James, I., Sarenmalm, E. K., Lundh Hagelin, C., . . . Öhlén, J. (2016). Palliative Care Research: A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 2012. Scandinavian Journal of Caring Sciences, 30(1), 5-25
Open this publication in new window or tab >>Palliative Care Research: A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 2012
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2016 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 30, no 1, p. 5-25Article, review/survey (Refereed) Published
Abstract [en]

BACKGROUND: In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci.

METHODS: A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'.

RESULTS: A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age.

CONCLUSIONS: The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes.

Keywords
Sweden, end-of-life care, palliative care, research designs, research methods, review
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-7392 (URN)10.1111/scs.12253 (DOI)26190052 (PubMedID)
Available from: 2019-04-16 Created: 2019-04-16 Last updated: 2023-12-07Bibliographically approved
Holm, M., Carlander (Goliath), I., Fürst, C.-J., Wengström, Y., Årestedt, K., Öhlen, J. & Henriksson (Alvariza), A. (2015). Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: A qualitative study from the perspectives of health professionals and family caregivers. BMC Palliative Care, 14(16)
Open this publication in new window or tab >>Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: A qualitative study from the perspectives of health professionals and family caregivers
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2015 (English)In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 14, no 16Article in journal (Refereed) Published
Abstract [en]

Background: Family caregivers in palliative care have a need for knowledge and practical support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in specialized palliative home care.

Methods: A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver’s educational, emotional and practical involvement as knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation to family caregivers by healthcare professionals from an intervention manual based on the theoretical framework. For the qualitative data collection, an interpretive descriptive design was chosen. Data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis.

Results: From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was described as a positive experience. Although the content was not always adjusted to the family caregivers’ individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work.

Conclusions: The theoretical framework of knowing, being and doing used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.

Keywords
Family caregivers, Health professionals, Home care, Psycho-educational intervention, Palliative care, Support
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-4600 (URN)10.1186/s12904-015-0015-1 (DOI)25903781 (PubMedID)
Available from: 2015-05-11 Created: 2015-05-11 Last updated: 2024-01-22Bibliographically approved
Henriksson (Alvariza), A., Carlander (Goliath), I. & Årestedt, K. (2015). Factors associated with feelings of reward during ongoing family palliative caregiving. Palliative & Supportive Care, 13(3), 505-12
Open this publication in new window or tab >>Factors associated with feelings of reward during ongoing family palliative caregiving
2015 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 3, p. 505-12Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: Of the few studies that have paid attention to feelings of reward in family palliative caregiving, most are retrospective and examine the experiences of bereaved family caregivers. Although feeling rewarded has been described as an influence that may facilitate the way family caregivers handle the caregiving situation, no study has sought to identify the factors associated with feelings of reward while providing ongoing family palliative care. The aim of this study, therefore, was to identify influential factors in feelings of reward experienced by family palliative caregivers.

METHOD: Our study had a correlational cross-sectional design. Family caregivers (n = 125) of patients receiving specialized palliative care were consecutively recruited from four settings. These caregivers answered a questionnaire that included the Rewards of Caregiving Scale (RCS). This questionnaire included questions about demographic background and scales to measure preparedness for caregiving, feelings of hope, perceived health, and symptoms of anxiety and depression. Correlation and regression analyses were conducted to identify factors associated with rewards.

RESULTS: The results demonstrated that the more prepared caregivers with higher levels of hope felt more rewarded, while caregivers with higher levels of anxiety and those in a spousal relationship with the patient felt less rewarded by caregiving.

SIGNIFICANCE OF RESULTS: It seems reasonable that feeling rewarded can be a significant contributor to the overall experience of providing ongoing palliative care. The situation of family caregivers has been shown to be multifaceted and complex, and such covariant factors as preparedness, anxiety, hope, and being in a spousal relationship with the patient to influence this experience.

Place, publisher, year, edition, pages
Cambridge University Press, 2015
Keywords
Association, Caregiving, Family caregivers, Palliative care, Rewards
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-7231 (URN)10.1017/S1478951514000145 (DOI)25994479 (PubMedID)
Available from: 2019-01-11 Created: 2019-01-11 Last updated: 2024-02-23Bibliographically approved
Henriksson (Alvariza), A., Carlander (Goliath), I. & Årestedt, K. (2015). Feelings of rewards among family caregivers during ongoing palliative care. Palliative & Supportive Care, 13(6), 1509-1517
Open this publication in new window or tab >>Feelings of rewards among family caregivers during ongoing palliative care
2015 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 6, p. 1509-1517Article in journal (Refereed) Published
Abstract [en]

Objectives: Palliative family caregivers appear to experience the rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have attended to the positive and rewarding aspects in palliative family caregiving. In addition, most studies on rewards are retrospective and examine the experiences of bereaved family caregivers. The present study aimed at describing feelings of reward among family caregivers during ongoing palliative care. A further aim was to compare the experience of rewards in relation to sex and age. Methods: The sample consisted of 125 family caregivers and took place in three specialist palliative care units and one hematology unit. Participants answered a questionnaire including demographic background questions and the Rewards of Caregiving Scale (RCS). Descriptive statistics were employed to describe characteristics of the participants and the level of rewards. A Mann-Whitney U test was used to compare differences between groups of different sex and age. Results: Palliative family caregivers reported general high levels of reward. The greatest source of rewards involved feelings of being helpful to patients. This was closely followed by giving something to patients that brought them happiness and being there for them. The smallest sources of rewards were related to personal growth, self-satisfaction, and personal meaning. There was also an association between rewards and age but not between men and women. Significance of results: Family caregivers experienced the rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of reward seem to be about handling a situation in a satisfying way, feeling competent and confident to take care of the patient and thereby feeling proud. Support could preferably be designed to improve a family caregiver's ability to care and to facilitate the positive aspects and rewards of caregiving and focus on strengths and resources.

Keywords
Palliative care, Family caregivers, Rewards, Caregiving
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-4208 (URN)10.1017/S1478951513000540 (DOI)24128643 (PubMedID)
Available from: 2014-11-21 Created: 2014-11-21 Last updated: 2021-03-30Bibliographically approved
Wallin, V., Carlander (Goliath), I., Sandman, P.-O. & Håkanson, C. (2015). Meanings of eating deficiencies for people admitted to palliative home care. Palliative & Supportive Care, 13(05), 1231-1239
Open this publication in new window or tab >>Meanings of eating deficiencies for people admitted to palliative home care
2015 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 05, p. 1231-1239Article in journal (Refereed) Published
Abstract [en]

Food and eating are embedded in people's everyday social lives: at home with family members and as part of social interactions. For people with progressive life-limiting conditions, however, eating is often obstructed. The objective of the present study was to explore the meanings of living with eating deficiencies at the end of life among people admitted to specialist palliative home care.

This qualitative inductive study employed an interpretive descriptive approach. A dozen persons, with various diagnoses and eating deficiencies, admitted to two specialist palliative home care units, participated. Data were collected through individual repeated interviews. Data collection and analysis were guided by the interpretive description method.

The results reveal that eating deficiencies among people with progressive life-limiting conditions are existentially loaded markers of impending death. Finding ways to overcome declined food intake and hampered eating enabled our participants to feel able to influence their own well-being and remain hopeful. The results also showed that the eating deficiencies influenced participants' relationships and social interactions in ways that hampered their possibilities of sharing valuable moments together with friends and family members during the final period of life.

Efforts to minimize the distress that people experience in relation to the challenges they face with eating deficiencies are important for well-being at the end of life. Person-centered approaches to acknowledge and support individuals' own ways of experiencing and dealing with their eating deficiencies are recommended that include a multidimensional perspective on food and eating.

Keywords
Eating deficiencies, Existential, Food intake, Interpretive description, Palliative care
National Category
Health Sciences Nursing
Identifiers
urn:nbn:se:esh:diva-4903 (URN)10.1017/S1478951514001199 (DOI)25335943 (PubMedID)
Note

Publication status in dissertation: Published online october 22

Available from: 2015-11-05 Created: 2015-11-05 Last updated: 2023-02-16Bibliographically approved
Årestedt, K., Carlander (Goliath), I. & Henriksson (Alvariza), A. (2014). Factors Associated with Feelings of Reward during Ongoing Palliative Family Caregiving. In: Palliative Medicine: . Paper presented at 8th World Research Congress of the European Association of Palliative Care, EAPC, Lleida, Spain (pp. 699-699). Sage Publications
Open this publication in new window or tab >>Factors Associated with Feelings of Reward during Ongoing Palliative Family Caregiving
2014 (English)In: Palliative Medicine, Sage Publications, 2014, p. 699-699Conference paper, Poster (with or without abstract) (Refereed)
Abstract [en]

Objectives: Of the few studies that have paid attention to feelings of reward in palliative family caregiving, most are retrospective and examine the experiences of bereaved family caregivers. Although feeling rewarded has been described as an influence that may facilitate the way family caregivers handle the caregiving situation, no study has sought to identify factors associated with feelings of reward while providing ongoing family palliative care. The aim of this study, therefore, was to identify influential factors in feelings of reward in family palliative caregivers. Methods: The study had a correlational cross-sectional design. Family caregivers (n = 125) of patients receiving specialized palliative care were consecutively recruited from four settings. These caregivers answered a questionnaire including the Rewards of Caregiving Scale (RCS). The questionnaire also included questions about demographic background and scales to measure preparedness for caregiving, feelings of hope, perceived health, and symptoms of anxiety and depression. Correlation and regression analyses were conducted to identify factors associated with rewards. Results: The results showed that more prepared caregivers with higher levels of hope felt more rewarded, while caregivers with higher levels of anxiety and those in a spousal relationship to the patient felt less rewarded by caregiving. Significance of results: It seems reasonable that feeling rewarded can significant to the overall experience of providing ongoing palliative care. The situation of family caregivers has been shown to be multifaceted and complex, and co-varying factors such as preparedness, anxiety, hope, and being in a spousal relationship with the patient influence the experience.

Place, publisher, year, edition, pages
Sage Publications, 2014
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-3930 (URN)10.1177/0269216314532748 (DOI)
Conference
8th World Research Congress of the European Association of Palliative Care, EAPC, Lleida, Spain
Available from: 2014-06-17 Created: 2014-06-17 Last updated: 2021-03-30Bibliographically approved
Henriksson (Alvariza), A., Carlander (Goliath), I. & Årestedt, K. (2014). Feelings of Reward among Family Caregivers during Ongoing Palliative Care. In: Catherine Walshe (Ed.), Palliative Medicine: . Paper presented at 8th World Research Congress of the European Association of Palliative Care, EAPC, Lleida, Spain (pp. 613-614). Sage Publications
Open this publication in new window or tab >>Feelings of Reward among Family Caregivers during Ongoing Palliative Care
2014 (English)In: Palliative Medicine / [ed] Catherine Walshe, Sage Publications, 2014, p. 613-614Conference paper, Poster (with or without abstract) (Refereed)
Abstract [en]

Objectives: Palliative family caregivers appear to experience rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have especially attended to the positive and rewarding aspects in palliative family caregiving. In addition, most studies on rewards are retrospective and examine the experiences of bereaved family caregivers. This study aimed to describe feelings of rewards among family caregivers during ongoing palliative care. A further aim was to compare experience of rewards in relation to sex and age. Methods: The sample consisted of 125 family caregivers and the study took place in three specialist palliative care units and one hematology unit. Participants answered a questionnaire including demographic background questions and the Rewards of Caregiving Scale (RCS). Descriptive statistics were used to describe characteristics of the participants and the level of rewards. Mann-Whitney U test was used to compare differences between groups of different sex and age. Results: Palliative family caregivers reported in general high levels of reward.The largest source of rewards was feelings of being helpful to the patient. This was closely followed by rewards as a consequence of giving something to the patients that brought her/him happiness and being there for the patient. The smallest sources of rewards were personally growth, self-satisfaction and personal meaning. There was an association between rewards and age but not between men and women. Conclusions: Family caregivers experienced rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of rewards seem to be about handling the situation in a satisfying way, to feel competent and confident to take care of the patient and thereby feel proud. Support could preferably be designed aiming to improve family caregiver’s ability to care and to facilitate rewards of caregiving and focus on strengths and resources.

Place, publisher, year, edition, pages
Sage Publications, 2014
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-3929 (URN)10.1177/0269216314532748 (DOI)
Conference
8th World Research Congress of the European Association of Palliative Care, EAPC, Lleida, Spain
Available from: 2014-06-17 Created: 2014-06-17 Last updated: 2021-03-30Bibliographically approved
Wallin, V., Carlander (Goliath), I., Sandman, P.-O., Ternestedt, B.-M. & Håkanson, C. (2014). Maintaining ordinariness around food: Partners' experienceies of everyday life with a dying person. Journal of Clinical Nursing, 23(19-20), 2748-2756
Open this publication in new window or tab >>Maintaining ordinariness around food: Partners' experienceies of everyday life with a dying person
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2014 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 23, no 19-20, p. 2748-2756Article in journal (Refereed) Published
Abstract [en]

Aims and objectives: To explore partners’ experiences of everyday life in caring for a dying person with eating deficiencies at home.

Background: When a dying person receives care at home, eating deficiencies can influence everyday life for family members, who often take responsibility for the provision of food and meals. The literature reveals this to be emotionally stressful. Partners of dying persons are challenged both as caregivers and as partners who will soon lose their life companion. There is a need for studies that provide enhanced understanding about the influence of dying persons’ eating deficiencies on their partners, from the perspective of everyday life.

Design: A qualitative design was chosen to obtain experience-based knowledge of relevance for the clinical context of palliative home care.

Methods: Nine people were purposefully selected and interviewed three–six months after the death of their partner. Data collection and analysis were guided by an interpretive descriptive method.

Results: The partners described experiences of how eating deficiencies brought about changes in the participants’ everyday lives. Two patterns of experiences were identified: the challenge of doing the best for their dying partner around matters involving food and mealtimes, and experiences of striving to maintain ordinariness, including holding on to social values around food, despite experiences of unfamiliarity when the dying partners’ habits were changed.

Conclusion:Living close to a person who has eating deficiencies at the end of life is challenging, both from a caring perspective and for personal well-being.

Relevance to clinical practice: The findings can assist palliative home care teams and other healthcare professionals to give support that goes beyond giving practical advice about food. Initiating talk about the current situation around food and meals at home, by posing questions and opening the way for conversations, is suggested.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2014
Keywords
Eating, Everyday life, Family, Food, Interview, Palliative care, Qualitative research
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-4149 (URN)10.1111/jocn.12518 (DOI)24372727 (PubMedID)
Note

This research was funded by the Erling-Persson Family Foundation and Ersta Sköndal University College.

Available from: 2014-10-23 Created: 2014-10-23 Last updated: 2024-02-23Bibliographically approved
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ORCID iD: ORCID iD iconorcid.org/0000-0001-8245-5479

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