Measuring Family Members’ Satisfaction with End-of-Life Care in Long-Term Care: Adaptation of the CANHELP Lite Questionnaire

Nadin, Shevaun; Miandad, Mohammed Ali; Kelley, Mary Lou; Marcella, Jill; Heyland, Daren K.

doi:10.1155/2017/4621592

Cited by 10 publications

(13 citation statements)

References 89 publications

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“…The internal consistency analysis was satisfactory (Cronbach's alpha = 0.950), suggesting excellent homogeneity of the items. These values are in line with those reported in the original studies [29,30].…”

Section: Discussionsupporting

confidence: 92%

“…A shorter version of the instrument was developed [29,30]. The CANHELP Lite Bereavement Questionnaire is a 24-item instrument with two items about overall satisfaction with care and 22 items that fall into one of five quality of care subscales: relationship with the doctors; characteristics of doctors and nurses; illness management; communication and decision making; and your involvement.…”

Section: Introductionmentioning

confidence: 99%

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Cultural Adaptation and Validation of the Portuguese Version of the CANHELP Lite Bereavement Questionnaire

Pereira¹,

Ferreira²,

Abrantes³

et al. 2020

Healthcare

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Background: Satisfaction with care is an important outcome measure in end-of-life care. Validated instruments are necessary to evaluate and disseminate interventions that improve satisfaction with care at the end of life, contributing to improving the quality of care offered at the end of life to the Portuguese population. The purpose of this study was to perform a cross-cultural adaptation and psychometric analysis of the Portuguese version of the CANHELP Lite Bereavement Questionnaire. Methods: Methodological research with an analytical approach that includes translation, semantic, and cultural adaptation. Results: The Portuguese version comprised 24 items. A panel of experts and bereaved family members found it acceptable and that it had face and content validity. A total of 269 caregivers across several care settings in the northern region of Portugal were recruited for further testing. The internal consistency analysis of the adapted instrument resulted in a global alpha value of 0.950. The correlation between the adapted CANHELP questionnaire and a global rating of satisfaction was of 0.886 (p < 0.001). Conclusions: The instrument has good psychometric properties. It was reliable and valid in assessing caregivers’ satisfaction with end-of-life care and can be used in both clinical and research settings.

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Section: Discussionsupporting

confidence: 92%

Section: Introductionmentioning

confidence: 99%

Cultural Adaptation and Validation of the Portuguese Version of the CANHELP Lite Bereavement Questionnaire

Pereira¹,

Ferreira²,

Abrantes³

et al. 2020

Healthcare

Self Cite

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“…The perceived quality of palliative care is often measured by asking about satisfaction with care, generally resulting in high satisfaction with almost all aspects of care e.g. [7, 8]. However, asking about care satisfaction may lead to socially desirable responses, because care users are often grateful to and dependent on their care providers.…”

Section: Introductionmentioning

confidence: 99%

What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer

et al. 2019

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BackgroundIn the Netherlands, general practitioners (GPs) and community nurses play a central role in the palliative care for home-dwelling patients with advanced cancer and their relatives. To optimize the palliative care provision at home, it is important to have insight in the elements that patients and relatives consider essential for high-quality palliative care, and whether these essentials are present in the actual care they receive.MethodsQualitative semi-structured interviews were conducted with 13 patients with advanced cancer and 14 relatives. The participants discussed their experiences with the care and support they received from the GP and community nurses, and their views on met and unmet needs. Interview data were analysed according to the principles of thematic analysis.ResultsPatients as well as relatives considered it important that their GP and community nursing staff are medically proficient, available, person-focused and proactive. Also, proper information transfer between care professionals and clear procedures when asking for certain resources or services were considered essential for good palliative care at home. Most interviewees indicated that these essential elements were generally present in the care they received. However, the requirements of ‘proper information transfer between professionals’ and ‘clear and rapid procedures’ were mentioned as more difficult to meet in actual practice. Patients and relatives also emphasized that an alert and assertive attitude on their own part was vital in ensuring they received the care they need. They expressed worries about other people who are less vigilant regarding the care they receive, or who have no family to support them in this.ConclusionsMedical proficiency, availability, a focus on the person, proper information transfer between professionals, clear procedures and proactivity on the part of GPs and community nursing staff are considered essential for good palliative care at home. Improvements are particularly warranted with regard to collaboration and information transfer between professionals, and current bureaucratic procedures. It is important for care professionals to ensure that the identified essential elements for high-quality palliative care at home are met, particularly for patients and relatives who are not so alert and assertive.

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“…Although patients at the end of life have the legal right to information about their situation, the difficulty to transmit this information has been reiterated by caregivers [5,15,24]. Adequate information facilitates the decision-making process and reduces suffering by reducing uncertainty and enabling compliance with the wishes of the person at the end of life [9,25].…”

Section: Discussionmentioning

confidence: 99%

Communicating Health Information at the End of Life: The Caregivers’ Perspectives

Ibáñez‐Masero

Carmona-Rega

Fernández

et al. 2019

IJERPH

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Health information and communication are key elements that allow patients and family members to make decisions about end-of-life care and guarantee a death with dignity. Objective: To understand caregivers’ experiences regarding health information and communication during the illness and death of family members. Methods: This qualitative study was conducted in Andalusia based on the paradigm of hermeneutic phenomenology. Participants were caregivers who had accompanied a family member at the end of life for over 2 months and less than 2 years. Five nominal groups and five discussion groups were established, and 41 in-depth interviews with 123 participants were conducted. Atlas.ti 7.0 software was used to analyze the discourses. A comprehensive reading was carried out along with a second reading. The most relevant units of meaning were identified, and the categories were extracted. The categories were then grouped in dimensions and, finally, the contents of each dimension were interpreted and described given the appropriate clarifications. Results: Four dimensions of the dying process emerged: differences in caregivers’ perceptions of information and communication, a conspiracy of silence, consequences of the absence or presence of information, and the need for a culture change. Conclusions: Poor management of health information and communication at the end of life increased the suffering and discomfort of patients and their families. The culture of denying and avoiding death is still present today. A change in education about death would better enable health professionals to care for patients at the end of life.

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Measuring Family Members’ Satisfaction with End-of-Life Care in Long-Term Care: Adaptation of the CANHELP Lite Questionnaire

Cited by 10 publications

References 89 publications

Cultural Adaptation and Validation of the Portuguese Version of the CANHELP Lite Bereavement Questionnaire

Cultural Adaptation and Validation of the Portuguese Version of the CANHELP Lite Bereavement Questionnaire

What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer

Communicating Health Information at the End of Life: The Caregivers’ Perspectives

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