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.

Experiences of health service access: A qualitative interview study of people living with Parkinson's disease in Ireland.

BACKGROUND: People with Parkinson's disease (PD) do not always access specialist outpatient services in a timely manner in Ireland. The perspectives of people living with PD, relating to service access, are largely absent in the existing literature. AIM: To explore experiences of PD service access for people living with PD, using a qualitative approach. METHODS: Purposive maximum variation sampling was used. Semi-structured telephone interviews were conducted with 25 service users, including people with PD (n = 22) and supporting carers (n = 3). Informed consent was obtained from all participants. Interviews ranged in duration from 30 to 90 min. Data were managed in NVivo 12 and interpreted inductively using thematic analysis. The researchers were reflexive throughout the research process. The Consolidated Criteria for Reporting Qualitative Research checklist was employed to maximise transparency. RESULTS: The findings highlight several key barriers to and facilitators of equitable and timely service access. Three key themes were identified comprising experiences of PD service access including 'geographical inequity', 'discriminatory practices', and 'public and private system deficits'. Together, these themes illustrate how a two-tiered and under-resourced health system lacks capacity, in terms of infrastructure and workforce, to meet PD needs for both public and private patients in Ireland. CONCLUSIONS: These findings point to problems for PD care, relating to (i) how the health system is structured, (ii) the under-provision and under-resourcing of specialist outpatient PD services, including medical, nursing, and multidisciplinary posts, and (iii) insufficient PD awareness education and training across health settings. The findings also show that telemedicine can provide opportunities for making access to certain aspects of PD care more flexible and equitable, but the feasibility and acceptability of technology-enabled care must be assessed on an individual basis. Implications for policy, practice and research are discussed. PATIENT OR PUBLIC CONTRIBUTION: The design and conduct of this study were supported by an expert advisory group (EAG) of 10 co-researchers living with PD. The EAG reviewed the interview schedule and the protocol for this study and provided detailed feedback from their perspective, to improve the methods, including the interview approach. The group also reviewed the findings of the study and contributed their insights on the meaning of the findings, which fed into this paper.

'Body on the line': experiences of tackle injury in women's rugby union - a grounded theory study.

OBJECTIVES: Tackle-related injuries account for up to 67% of all match injuries in women's rugby union. The perspective of women players on tackle injury can help key stakeholders understand psychosocial determinants of tackle injury risk and prevention. We aimed to capture psychosocial processes that explain tackle injury experiences and behaviours in women's rugby union. METHODS: We conducted a qualitative study using a grounded theory approach. Adult women players, with at least 1-year senior level experience, were recruited from Europe, South Africa and Canada between December 2021 and March 2022. Data were collected through semistructured interviews and analysed in line with grounded theory coding procedures. RESULTS: Twenty-one players, aged 20-48 years with a mean 10.6 years of rugby playing experience, participated. In our analysis, we identified three categories central to participants' experiences of tackle injury: (1) embodied understandings of tackle injury, (2) gender and tackle injury risk and (3) influences on tackle injury behaviours. Participants reported a sense of fear in their experience of tackling but felt that tackle injuries were an inevitable part of the game. Tackle injury was described based on performance limitations. Tackle injury risks and behaviours were influenced by gendered factors perpetuated by relations, practices and structures within the playing context of women's rugby union. CONCLUSION: Women's tackle injury experiences were intertwined with the day-to-day realities of marginalisation and under preparedness. Grounded in the voices of women, we have provided recommendations for key stakeholders to support tackle injury prevention in women's rugby.

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.

Confused About Theoretical Sampling? Engaging Theoretical Sampling in Diverse Grounded Theory Studies.

Theoretical sampling is a key procedure for theory building in the grounded theory method. Confusion about how to employ theoretical sampling in grounded theory can exist among researchers who use or who want to use the grounded theory method. We illustrate how we employed theoretical sampling in diverse grounded theory studies and answer key questions about theoretical sampling in grounded theory. We show how theoretical sampling functions in grounded theory and how it differs from sampling for data generation alone. We demonstrate how induction, retroduction, and abduction operate in grounded theory and how memoing drives theoretical sampling in the pursuit of theory. We explicate how theoretical sampling can contextualize data to build concepts and theory. Finally, we show how theoretical sampling in grounded theory operates in secondary analysis to derive theory that goes beyond the original purpose of data collection.

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.

Acceptance and decision making in amyotrophic lateral sclerosis from a life-course perspective.

Researchers have explored perceptions of health care services among people with amyotrophic lateral sclerosis (ALS), but little is known about how and why people with ALS engage with services. We undertook a grounded theory study to identify key psychosocial processes that underpin how and why people with ALS engage with health care services. We conducted in-depth interviews with 34 participants sampled from the Irish ALS population-based register. We found that age and life stage shaped participants' decision making about care. Participants in later life were more accepting of ALS and of death than young and middle-aged participants. Family was the primary context to how participants engaged with services, and their decisions about care were shaped by parenthood at different life stages. Health care professionals need to be attuned to the impact of life-course trajectories and family relations on the decisions people with ALS make about their care.

Occupational therapists' assessment and reporting of functional cognition in stroke care.

PURPOSE: To investigate how functional cognition of people post-stroke is evaluated and reported by occupational therapists in Ireland. Functional cognition refers to the use and integration of cognitive skills for daily function. METHODS: This study used a qualitative design. Six focus groups and one individual interview were conducted with 20 occupational therapists purposively sampled for variation across different clinical grades. Data were analysed according to the Braun and Clark thematic analysis framework. RESULTS: Participants felt that assessment of functional cognition was an integral feature of occupational therapy assessment in stroke care but acknowledged that terminology used by occupational therapists for functional cognition was inconsistent. Non-standardised observational assessment was routinely used by participants. Challenges were reported with respect to written documentation of non-standardised observations. Participants reported that use of standardised cognitive assessments required considered clinical reasoning before administration. Standardised performance-based assessments were not widely implemented by participants. CONCLUSION: Occupational therapists in Ireland reported a multi-component assessment process to evaluate functional cognition post-stroke. Establishing practice guidelines for the assessment of functional cognition may be of benefit to occupational therapists working in stroke care. Further research is needed to quantify procedures in this assessment process to account for variation in practice.

The assessment of functional cognition in stroke rehabilitation is integral to occupational therapy practice.Occupational therapists described the assessment of functional cognition as a multi-component assessment drawing from three main modalities: standardised cognitive assessments; non-standardised observations; and performance-based assessments.Professional education in, and practice guidelines, for the assessment and reporting of functional cognition could be beneficial for occupational therapists in stroke care to streamline their assessment and reporting of functional cognition.

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.

Patient and Caregiver Reciprocal Support: Impact on Decision Making in Specialist Palliative Care.

CONTEXT: Patients and informal caregivers in palliative care can reciprocate in supporting one another. However, how reciprocal support among patients and informal caregivers in palliative care impacts on their decision making for care is not well understood. OBJECTIVES: To identify how reciprocal support among patients with advanced illness and their informal caregivers in specialist palliative care impacts on their decision making for care. METHODS: Between July 2021 and May 2022, 30 qualitative interviews were conducted with 14 patient and caregiver dyads, seven nondyad caregiver participants and one nondyad patient participant (total n = 36), recruited from a large regional specialist palliative care service. Data were analyzed using Corbin and Strauss grounded theory method. RESULTS: Reciprocal support among patients and informal caregivers was underpinned by obligation and choice. Caregivers who felt obliged to care had difficulty communicating with the patient about the patient's preferences for care and their own wishes for patient care. Patients who felt obliged to accept support from their caregiver tended to minimize caregiver participation in decision making which made caregivers feel disempowered in discussions about patient care. Caregivers tended to be more involved in decision making when caregivers assumed caregiving duties by choice and when the patient did not feel restricted by their reliance on their caregiver. Open communication between patients and caregivers made patients more trusting of their caregiver. CONCLUSION: Patient and caregiver dyadic interventions in specialist palliative care involving decision making need to account for how obligation and choice manifest and function between the patient and caregiver.

"It's always the bare minimum" - A qualitative study of players' experiences of tackle coaching in women's rugby union.

OBJECTIVES: Tackle coaching forms a cornerstone of training in rugby and is designed to enhance performance and mitigate tackle injury. The athlete voice can help key stakeholders understand the psychosocial determinants that shape skill development in relation to tackle coaching. We aimed to capture player experiences of tackle coaching in women's rugby union. DESIGN: Qualitative study using the grounded theory approach. METHODS: Current women rugby union players, with at least 1-year senior level experience, were recruited from Europe, Africa and North America between December 2021 and March 2022 to participate in the study. Data were collected through semi-structured interviews and analysed in line with grounded theory coding procedures. RESULTS: The 21 players were aged 20-48 years with a mean 10.6 years of rugby playing experience. Analysis revealed that the experiences of tackle coaching that shaped women's tackle skill development and sense of preparedness ranged from constraining to empowering, and gender was a pivotal influence in creating meaning. Participants expected and accepted the bare minimum in tackle coaching as the price that they had to pay for inclusion in rugby. CONCLUSIONS: Participants' experiences of tackle coaching were entangled in inequitable club structures and cultures where men's rugby is the norm. Empowering tackle coaching in women's rugby union must be bespoke to the given context and the needs of women players. The recommendations offered in this paper encourage discussion as to how best to empower women's tackle development in rugby.

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.

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.

Patients' perceptions of services and preferences for care in amyotrophic lateral sclerosis: a review.

Service providers and service users often have different perspectives on health and social care services. We have undertaken a systematic review of empirical data between 1988 and March 2011 relating to ALS service users' perspectives on health and social care services. Forty-seven texts were extracted and a narrative synthesis conducted. Few studies have explored ALS patients' experiences in relation to their satisfaction with services. Our review showed that ALS patients expect dignified care but they are often dissatisfied with health care services and have unmet expectations of their care. Most studies of decision-making and preferences for care have focused on end-of-life intervention. Various factors influence preferences for care from the service user perspective and people with ALS may adjust their use of services as they negotiate change. In conclusion, further research on the timeliness of services to meet changing needs of service users is required. The service user experience of allied health care services prior to end-of-life care also warrants investigation. Service providers need to support people with ALS as they negotiate feelings of acceptance and independence. Research to identify the key parameters of the ALS patient experience of services is required.

Decision-making among patients and their family in ALS care: a review.

OBJECTIVES: Practice guidelines in ALS care emphasise the role of the patient and their family in the decision-making process. We aimed to examine the ALS patient/family relationship in the decision-making process and to ascertain how patients and their family can shape one another's decisions pertaining to care. METHODS: We conducted a review of peer-reviewed empirical research, published in full and in English between January 2007 and January 2017, relating to care decision-making among ALS patients and their family. Database sources included: Medline; CINAHL; AMED; PsycINFO; PsycARTICLES; and Social Sciences Full Text. A narrative synthesis was undertaken. RESULTS: Forty-seven studies from the empirical literature were extracted. The family viewpoint was captured primarily from family members with direct care-giving duties. Patients' cognitive status was not routinely assessed. The findings revealed that the decision-making process in ALS care can be contoured by patients' and family caregivers' perceived responsibilities to one another and to the wider family. CONCLUSIONS: Greater attention to family member roles beyond the primary caregiver role is needed. Strategies that integrate cognitively-impaired patients into the family decision-making process require investigation. Identification of the domains in which ALS patients and their family members support one another in the decision-making process could facilitate the development of patient/family decision-making tools in ALS care.

Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach.

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease, leading to death within an average of 2-3 years. A cure is yet to be found, and a single disease-modifying treatment has had a modest effect in slowing disease progression. Specialized multidisciplinary ALS care has been shown to extend survival and improve patients' quality of life, by providing coordinated interprofessional care that seeks to address the complex needs of this patient group. This review examines the nature of specialized multidisciplinary care in ALS and draws on a broad range of evidence that has shaped current practice. The authors explain how multidisciplinary ALS care is delivered. The existing models of care, the role of palliative care within multidisciplinary ALS care, and the costs of formal and informal care are examined. Critical issues of ALS care are then discussed in the context of the support rendered by multidisciplinary-based care. The authors situate the patient and family as key stakeholders and decision makers in the multidisciplinary care network. Finally, the current challenges to the delivery of coordinated interprofessional care in ALS are explored, and the future of coordinated interprofessional care for people with ALS and their family caregivers is considered.

"I hate being a burden": The patient perspective on carer burden in amyotrophic lateral sclerosis.

Research has shown that family caregivers of ALS patients encounter carer burden. Studies that have investigated the impact of caring on family in ALS have reported predominantly from the family caregiver perspective. We undertook in-depth qualitative interviews with a diverse group of ALS patients (n = 34) sampled from the Irish ALS population-based register and explored their experiences of receiving care from family members and from formal service providers. Interviews were audio recorded and transcribed and data were coded to identify psychosocial processes. Findings showed that patients perceived their care as a burden on family and had concerns about the adverse effects that caring had on family caregivers. However, participants also resisted being a burden on family and they provided emotional support to their family. Participants felt a strong sense of obligation towards family and their concern about family members shaped their expressed preferences for care. We identified that the caring process between ALS patients and their family is often bi-directional, leading in some cases to the patient experiencing carer burden. In conclusion, greater attention in ALS research and practice to patients' supportive roles in family is required to counterbalance the already strong focus on family caregiver burden.