How family caregivers help older relatives navigate statutory services at the end of life: A descriptive qualitative study

Williams, Lisa; Moeke-Maxwell, Tess; Wiles, Janine; Black, Stella; Trussardi, Gabriella; Kerse, Ngaire

doi:10.1177/0269216318765853

Cited by 25 publications

(35 citation statements)

References 41 publications

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“…The need for family involvement was in this study tied to the patients' incapacity to personally keep track of information and contact with the health care services. The family members in Williams et al's (2018) study reported similar findings; they felt compelled to navigate the patient's health services because they observed that it was challenging for the older patient to interact with the health services. It has been previously documented that older cancer patients may have difficulties remembering information and that family members help the patient recall information, ask questions and report symptoms, [39,59,60].…”

Section: Lack Of Routines For Family Involvementmentioning

confidence: 59%

A Valuable but Demanding Time Family Life During Advanced Cancer in an Elderly Family Member

Fjose

Eilertsen

Kirkevold

et al. 2016

Advances in Nursing Science

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This study explores experiences of elderly patients with cancer and their family members with regard to what is important and difficult in the family relationships during the palliative phase. Family group interviews were conducted with 26 families. The data were analyzed using qualitative content analysis. Three themes emerged: "Ensuring a positive final time together," "Avoiding tension and conflict," and "Concealing thoughts, feelings, and needs." The main theme, "A valuable but demanding time," indicates that although families find this phase of life challenging, they emphasize the importance of ensuring that this time is spent together in a positive way as a family.

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Section: Lack Of Routines For Family Involvementmentioning

confidence: 59%

A Valuable but Demanding Time Family Life During Advanced Cancer in an Elderly Family Member

Fjose

Eilertsen

Kirkevold

et al. 2016

Advances in Nursing Science

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“…In addition, it is documented that older patients often have to end chemotherapy due to side effects [ 16 , 17 ]. Five studies [ 18 – 22 ] have focused specifically on older patients’ and/or their family members’ experiences with the health care system. In other studies, wider ranges of patient’s have been studied, but the findings do not indicate any age effects related to health care system experiences [ 23 , 24 ].…”

Section: Introductionmentioning

confidence: 99%

“Non-palliative care” – a qualitative study of older cancer patients’ and their family members’ experiences with the health care system

Fjose

Eilertsen

Kirkevold

et al. 2018

BMC Health Serv Res

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BackgroundAmong all cancer patients in the palliative phase, ¾ have reached the age of 65. An aging population will increase the number of people afflicted with cancer, and create challenges for patients, family members and health services. Nevertheless, limited research has focused explicitly on the experiences and needs of older cancer patients in the palliative phase and their families. Therefore, the aim of this study is to explore what older home dwelling cancer patients in the palliative phase and their close family members, as individuals and as a family, experience as important and difficult when facing the health services.MethodsWe used a qualitative descriptive design. Data was collected through family group interviews with 26 families. Each interview consisted of an older home dwelling cancer patient and one to four family members with different relationships to the patient (e.g. spouse, adult children and/or children-in-law). Data was analysed by qualitative content analysis.ResultsThe main theme is “Non-palliative care” – health care services in the palliative phase not tailored to family needs. Three themes are revealed: 1) exhausting cancer follow-up, 2) a cry for family involvement, and 3) fragmented care.ConclusionThe health services seem poorly organised for meeting the demands of palliative care for older home dwelling cancer patients in the palliative phase and their family members. Close family members would like to contribute but health services lack systems for involving them in the follow-up of the patient.

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“…However, studies show that they need more support in decision-making and more opportunity to participate in housing decisions made for their cognitively-impaired loved ones [3]. While caregivers are often the experts on the older adult's condition, history and care experiences [4,5], they report negative experiences regarding this decision-making process, the choice, and the decision outcomes, possibly because of a lack of effective decision support [1,6].…”

Section: Introductionmentioning

confidence: 99%

Variations in factors associated with healthcare providers’ intention to engage in interprofessional shared decision making in home care: results of two cross-sectional surveys

Adekpedjou

Haesebaert

Stacey

et al. 2020

BMC Health Serv Res

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Background: DOLCE (Improving Decision making On Location of Care with the frail Elderly and their caregivers) was a post-intervention clustered randomised trial (cRT) to assess the effect of training home care teams on interprofessional shared decision-making (IP-SDM). Alongside the cRT, we sought to monitor healthcare providers' level of behavioural intention to engage in an IP-SDM approach and to identify factors associated with this intention. Methods: We conducted two cross-sectional surveys in the province of Quebec, Canada, one each at cRT entry and exit. Healthcare providers (e.g. nurses, occupational therapists and social workers) in the 16 participating intervention and control sites self-completed an identical paper-based questionnaire at entry and exit. Informed by the Integrated model for explaining healthcare professionals' clinical behaviour by Godin et al. (2008), we assessed their behavioural intention to engage in IP-SDM to support older adults and caregivers of older adults with cognitive impairment to make health-related housing decisions. We also assessed psychosocial variables underlying their behavioural intention and collected sociodemographic data. We used descriptive statistics and linear mixed models to account for clustering.

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How family caregivers help older relatives navigate statutory services at the end of life: A descriptive qualitative study

Cited by 25 publications

References 41 publications

A Valuable but Demanding Time Family Life During Advanced Cancer in an Elderly Family Member

A Valuable but Demanding Time Family Life During Advanced Cancer in an Elderly Family Member

“Non-palliative care” – a qualitative study of older cancer patients’ and their family members’ experiences with the health care system

Variations in factors associated with healthcare providers’ intention to engage in interprofessional shared decision making in home care: results of two cross-sectional surveys

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