How do Patients With Advanced Cancer and Family Caregivers Accommodate One Another in Decision-Making? Findings From a Qualitative Study in Specialist Palliative Care.

BACKGROUND: Patients with advanced cancer commonly involve family caregivers in decision-making for palliative care. However, how patients with advanced cancer and family caregivers accommodate each other in decision-making is unclear. METHODS: A qualitative study in advanced cancer was conducted with 14 patients and 19 family caregivers recruited from two hospices comprising a large regional specialist palliative care service in Ireland. Data comprised semi-structured interviews with participants. The data were analyzed using grounded theory coding procedures. RESULTS: Most patients preferred to make care decisions with their family caregiver or at least involve their family caregiver in care discussions. Patients engaged in shared decision-making because they felt they benefited from caregiver support. Patients accommodated family caregiver preferences out of concern for that person and because they trusted them. Family caregivers accommodated patient preferences because they wanted to honor the patient's wishes and felt a responsibility to protect patient autonomy when they had a close relationship with the patient. Prior conflict between the patient and family caregiver was a barrier to mutual accommodation. Although concealment was used as a mechanism to support accommodation between the patient and family caregiver, both sought to communicate openly with other family members to negate potential conflict between each other and the wider family. CONCLUSION: Patients with advanced cancer and family caregivers in specialist palliative care support one another by accommodating each other's preferences for patient care. Patients with advanced cancer and family caregivers accommodate one another in decision-making out of a sense of responsibility to one another.

Supportive relationships between patients and family caregivers in specialist palliative care: a qualitative study of barriers and facilitators.

OBJECTIVES: Patients with advanced illness and their family caregivers can be mutually supportive. However, what facilitates and/or restricts supportive relationships between patients and family caregivers in palliative care remains unclear. We aimed to identify key barriers to and facilitators of supportive relationships between people with advanced illness and family caregivers in specialist palliative care. METHODS: A qualitative study using grounded theory methodology was conducted. Semistructured interviews were undertaken with 15 patients with advanced illness and 21 family caregivers purposively and theoretically sampled from a large regional specialist palliative care service. Verbatim transcripts were analysed in line with grounded theory coding procedures. RESULTS: Mutual support was underpinned by mutual concern and understanding. Facilitators of supportive relationships included patients and family caregivers already having a close relationship, caregivers assuming caregiving duties by choice, caregivers feeling competent in a caregiving role, patients valuing caregiver efforts, availability of respite for the caregiver and direct support from healthcare professionals to help both patients and caregivers adjust to advanced illness. Barriers to supportive relationships included absence of support from the wider family, prior mutual conflict between the patient and caregiver, caregivers feeling constrained in their caregiving role and patient and caregiver distress induced by mutual loss. CONCLUSIONS: Multiple factors at both a micro (eg, relationship based) and mesolevel (eg, assistance from services) impact patient and family caregiver ability to support one another in specialist palliative care. Supportive relationships between patients and family caregivers are mediated by feelings pertaining to both control and loss.

Mutual support between patients and family caregivers in palliative care: A qualitative study.

BACKGROUND: Patients in receipt of palliative care services are often viewed primarily as recipients of support from their family caregiver. There is a dearth of evidence in palliative care on what comprises mutual support between patients and their family caregivers in palliative care. AIM: To identify processes of mutual support between patients and family caregivers in palliative care. DESIGN: Qualitative study comprising semi-structured interviews. Data were analysed using grounded theory procedures. SETTING/PARTICIPANTS: Fifteen patients with advanced illness (cancer n = 14, neurodegenerative n = 1) and 21 family caregivers recruited from a large regional-based hospice. RESULTS: Mutual support between patients and family caregivers comprised two primary modes in which support was provided and received. Mutual support involved both patients and family caregivers providing similar types of support to each other, and which typically manifested as emotional support. However, mutual support also occurred when patients reciprocated by providing emotional support to their family caregivers to compensate for other forms of support which they felt no longer able to provide. Patients supported family caregivers by involving them in decision-making for care and both patient and family caregiver preferences were influenced by obligation to their respective other. Mutual support comprised both disclosure and concealment. Involving family caregivers in patient care decision-making was intended by patients to help family caregivers adjust to a caregiving role. CONCLUSIONS: The findings inform the development and delivery of psychosocial interventions for patients and family caregivers in palliative care aimed at facilitating supportive relations between them.

Decision-making in palliative care: patient and family caregiver concordance and discordance-systematic review and narrative synthesis.

BACKGROUND: Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is not well understood. OBJECTIVES: To identify key factors and/or processes which underpin concordance and/or discordance between patients and family caregivers with respect to their preferences for and decisions about palliative care; and ascertain how patients and family caregivers manage discordance in decision-making in palliative care. METHODS: A systematic review and narrative synthesis of original studies published in full between January 2000 and June 2021 was conducted using the following databases: Embase; Medline; CINAHL; AMED; Web of Science; PsycINFO; PsycARTICLES; and Social Sciences Full Text. RESULTS: After full-text review, 39 studies were included in the synthesis. Studies focused primarily on end-of-life care and on patient and family caregiver preferences for patient care. We found that discordance between patients and family caregivers in palliative care can manifest in relational conflict and can result from a lack of awareness of and communication about each other's preferences for care. Patients' advancing illness and impending death together with open dialogue about future care including advance care planning can foster consensus between patients and family caregivers. CONCLUSIONS: Patients and family caregivers in palliative care can accommodate each other's preferences for care. Further research is needed to fully understand how patients and family caregivers move towards consensus in the context of advancing illness.

Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis.

BACKGROUND: Patients in palliative care are usually conceptualised as recipients of support from family caregivers. Family caregivers in palliative care are typically defined as providers of support to patients. Little is known about reciprocal dimensions of support provision between patients and family caregivers in palliative care. AIM: To identify processes of mutual support between patients and family caregivers in palliative care and factors that contribute to or obstruct mutual support between patients and family caregivers in palliative care. DESIGN: Systematic review and narrative synthesis of original peer-reviewed research published between January 2000 and March 2020. DATA SOURCES: Medline, CINAHL, Embase, AMED, PsycINFO and PsycARTICLES. RESULTS: After full-text screening, 10 studies were included. We identified that patients and family caregivers in palliative care can support one another by mutually acknowledging the challenges they face, by remaining positive for one another and by jointly adapting to their changing roles. However, patients and family caregivers may not routinely communicate their distress to each other or reciprocate in distress disclosure. A lack of mutual disclosure pertaining to distress can result in conflict between patients and family caregivers. CONCLUSIONS: Few studies have focused in whole or in part, on reciprocal dimensions of support provision between patients with advancing non-curable conditions, and their family caregivers in palliative care. Further research is required to identify key domains of mutual support between patients and family caregivers in palliative care.

Understanding psycho-social processes underpinning engagement with services in motor neurone disease: a qualitative study.

BACKGROUND: People with motor neurone disease access healthcare services from disease onset to end-of-life care, but there has been paucity of research on how people with motor neurone disease understand and use healthcare services. AIM: To identify key psycho-social processes that underpin how people with motor neurone disease engage with healthcare services. DESIGN: Grounded theory approach comprising in-depth qualitative interviews was used in this study. Data were collected and analysed using open, axial and selective coding procedures. SETTING/PARTICIPANTS: A total of 34 people with motor neurone disease were recruited from the Irish motor neurone disease population-based register. RESULTS: We identified that control, reassurance, resignation and trust are key variables that shape how people with motor neurone disease engage with healthcare services. Participants exerted control in care to cope with loss. Most participants were resigned to death and sought reassurances from healthcare professionals about end-of-life care. Participants questioned the benefit of life-sustaining interventions in motor neurone disease and few of them associated life-sustaining interventions with palliative care. Participants trusted healthcare professionals who reassured them about their care and who were attuned to how they were coming to terms with loss. CONCLUSION: This study identified new and important aspects of control, trust and reassurance which shed light on how people with motor neurone disease engage with healthcare professionals and approach end-of-life care. People with motor neurone disease exert control in care and meaningful relationships with healthcare professionals are important to them. Some people with motor neurone disease prefer to die without life-sustaining interventions.

Experience of services as a key outcome in amyotrophic lateral sclerosis (ALS) care: the case for a better understanding of patient experiences.

People with amyotrophic lateral sclerosis (ALS) frequently express dissatisfaction with services. Patient satisfaction with services in ALS care is not always measured and service user perspectives are not usually included when evaluating the outcomes of care. There is a lack of consensus on what constitutes satisfaction for patients in ALS care. To date, health care professionals' conceptualization of outcomes in ALS care has excluded measures of patient satisfaction with services. Exploring the context of the ALS service user experience of care will identify a conceptual framework that will include the domains of satisfaction with care for patients with ALS. An instrument that draws on the ALS patient perspective of services, developed on the basis of qualitative investigation, should be used to measure satisfaction with services.