‘She's usually quicker than the calculator’: financial management and decision‐making in couples living with dementia

This article explores how married couples managed their finances and made financial decisions when one spouse had dementia, drawing comparisons with the approaches used prior to the illness. More specifically, the article examines the role of social factors in influencing the involvement of people with dementia in financial management and decision‐making, particularly whether a gender dynamic adopted earlier in a marriage similarly influenced a gendered approach following dementia. The research formed part of a larger study of everyday decision‐making by couples living with dementia which explored the role of non‐cognitive factors in influencing whether people with dementia were involved in decision‐making processes. Twenty‐one married couples living at home took part; the recently‐diagnosed were excluded. Qualitative methods ‐including participant observation and interviews ‐ were used to examine the couples’ fiscal management and decision‐making‐processes, the perceptions of people with dementia and their spouses about their current financial abilities and whether any support provided by spouse‐carers influenced their partners’ financial capacity. The fieldwork was undertaken in the North of England between June 2010 and May 2011. Thematic analysis of the data showed that social factors influenced the perceived capacity of people with dementia and the financial practices adopted by the couples. In particular, gender influenced whether people with dementia were involved in financial decisions. The research demonstrated that non‐cognitive factors need to be taken into account when assessing and facilitating the capacity of people with dementia. In addition, as people with dementia were somewhat marginalised in decisions about designating financial authority (Lasting Power of Attorney), spouse‐carers may need guidance on how to undertake advance care planning and how to support their relatives with dementia in major decision‐making, particularly when there are communication difficulties.     

‘Managing patient involvement’: provider perspectives on diabetes decision‐making

Background Most studies of shared decision‐making focus on acute treatment or screening decision‐making encounters, yet a significant proportion of primary care is concerned with managing patients with chronic disease. Aim To investigate provider perspectives on the role of patient involvement in chronic disease decision‐making. Design A qualitative, grounded theory study of patient involvement in diabetes care planning. Setting and participants Interviews were conducted with 29 providers (19 general practitioners, eight allied health providers, and two endocrinologists) who participated in diabetes care planning. Results Providers described a conflict between their responsibilities to deliver evidence‐based diabetes care and to respect patients’ rights to make decisions. While all were concerned with providing best possible diabetes care, they differed in the emphasis they placed on ‘treating to target’ or practicing ‘personalized care’. Those preferring to ‘treat to target’ were more assertive, while ‘personalized care’ meant being more accepting of the patient’s priorities. Providers sought to manage patient involvement in decision‐making according to their objectives. ‘Treating to target’ meant involving patients where necessary to tailor care to their needs and abilities, but limiting patient involvement in decisions about the overall agenda. ‘Personalized care’ meant involving patients to tailor care to patient preference. Discussion and conclusions Respecting a patient’s autonomy and delivering high‐quality diabetes care are important to providers. At times it may not be possible to do both, so a careful balance is required. Involving patients in decision‐making may be a means to this end, rather than an end in itself.     

Imagined futures: how experiential knowledge of disability affects parents’ decision making about fetal abnormality

Background Knowledge of disability is considered key information to enable informed antenatal screening decisions by expectant parents. However, little is known about the role of experiential knowledge of disability in decisions to terminate or continue with a pregnancy diagnosed with a fetal abnormality. Objective To explore the role that expectant parents’ experiential knowledge of disabilities and conditions can play in real‐life decisions to continue or end a pregnancy with a fetal abnormality. Design Secondary analysis of qualitative narrative interview data informed by contextual systems framework. Setting Participants were recruited throughout the United Kingdom and interviewed between 2004 and 2006. Participants Twenty‐four women and four of their male partners who had direct or indirect experience of disability or illness and who had proceeded with or ended a pregnancy diagnosed with a fetal abnormality. Findings Most respondents recounted using their experiential knowledge of disability, whether of their unborn baby’s condition or of a different condition, to try to imagine the future for their unborn child, themselves and their family when making their decision. Some, who were considering continuing their pregnancy and had little or no experience of their unborn baby’s specific disability, sought out others’ experiences of the condition following antenatal diagnosis.The nature of a parent’s experiential knowledge did not predict whether they continued with or terminated their pregnancy. Discussion Prospective parents may find it helpful to discuss their existing knowledge of their unborn baby’s condition with health professionals who are aware of the influence this might have on parents’ decisions.     

Decision making during serious illness: what role do patients really want to play?

Two surveys were conducted to determine what roles people actually want to assume in selecting cancer treatments. 436 newly diagnosed cancer patients and 482 members of the general public participated. Preferences were elicited using two card sort procedures, each of which described five potential roles in decision making. Findings suggested that the impact of being diagnosed with a life-threatening illness may influence preferences to participate. The majority (59%) of patients wanted physicians to make treatment decisions on their behalf, but 64% of the public thought they would want to select their own treatment if they developed cancer. Most patients (51%) and members of the public (46%) wanted their physician and family to share responsibility for decision making if they were too ill to participate. Sociodemographic variables accounted for only 15% of variance in preferences. These variables are not particularly useful in making predictions about which groups want more or less active roles in medical decision making.     

‘I live for today’: a qualitative study investigating older people’s attitudes to advance planning

This article reports investigation of prevalent understandings and systems of beliefs that underpin older people’s attitudes towards making plans for their future. The Mental Capacity Act 2005 (MCA) enables adults with capacity to make plans and decisions in advance, to arrange proxy decision‐making and provides safeguards for those who might lose the capacity to make decisions for themselves in the future. This study explored the attitudes of a diverse sample of 37 self‐declared well older people living in the community in England about their views on drawing up statements of wishes and documenting their decision‐making preferences. The study was conducted in early 2009. Findings revealed that most individuals had a personal tendency or preference towards planning, guided by personality, beliefs, living situation and the relevancy of planning to their situation. Financial plans and funeral arrangements were most commonly drawn up with an absence of health and social care plans, which participants tended to postpone considering. Housing and residential care were important for all. Overall, few participants had heard of the MCA and most were unsure where to turn for support. Participants appreciated support when discussing these issues; some turned to family, while others felt professionals were a more appropriate source of advice. The family doctor was cited as trustworthy and a potential place to begin inquiries. Conceptualising onset of certain debilitating conditions also encouraged participants to think about planning for them. This study has implications for public education campaigns and health‐related information that could potentially impact on many older people who are interested in making plans but are unaware that legal safeguards and practical support are available to aid this.     

Value of information on preference heterogeneity and individualized care.

BACKGROUND: Cost-effectiveness analysis traditionally focuses on identifying when treatments are cost-effective based on their average benefits and costs in the population. However, there may be considerable value in identifying when treatments are cost-effective for individual patients given their preferences or other personal attributes. OBJECTIVES: To present a theoretical framework to assess the potential value of identifying cost-effective treatments for individual patients given their preferences and to compare the value of individualized treatment decisions with the value of treatment decisions based on traditional population-level cost-effectiveness analysis. Methods . The authors calculate the expected value of individualized care (EVIC), which represents the potential value of providing physicians information on the preferences of individual patients, such as quality-of-life (QOL) weights, so as to make individualized treatment decisions. They also show how EVIC varies with insurance structures that do not internalize relative costs of treatments. They illustrate this theory using an example in which physicians make treatment choices for 65-year-old prostate cancer patients. RESULTS: The value of identifying cost-effective treatments at the individual level for 65-year-old prostate cancer patients in the United States is about $70 million annually. This is more than 100 times the $0.7 million annual value of identifying the cost-effective treatment on average for this population. However, failure to internalize costs almost eliminates the value of individualized care. CONCLUSIONS: The value of individualizing care can be far greater than the value of improved decision making at the group level. However, this can vary immensely with insurance. EVIC can provide a guide as to when the high value of individualized care may make population-level decision making especially at risk of providing poor guidance for coverage decisions. Future studies of the value of individualized care should also consider baseline levels of individualization of care.     

Reconciling the theory and reality of shared decision‐making: A “matching” approach to practitioner leadership

Shared decision making (SDM) evolved to resolve tension between patients’ entitlement to make health‐care decisions and practitioners’ responsibility to protect patients’ interests. Implicitly assuming that patients are willing and able to make “good” decisions, SDM proponents suggest that patients and practitioners negotiate decisions. In practice, patients often do not wish to participate in decisions, or cannot make good decisions. Consequently, practitioners sometimes lead decision making, but doing so risks the paternalism that SDM is intended to avoid. We argue that practitioners should take leadership when patients cannot make good decisions, but practitioners will need to know: (a) when good decisions are not being made; and (b) how to intervene appropriately and proportionately when patients cannot make good decisions. Regarding (a), patients rarely make decisions using formal decision logic, but rely on informal propositions about risks and benefits. As propositions are idiographic and their meanings context‐dependent, normative standards of decision quality cannot be imposed. Practitioners must assess decision quality by making subjective and contextualized judgements as to the “reasonableness” of the underlying propositions. Regarding (b), matched to judgements of reasonableness, we describe levels of leadership distinguished according to how directively practitioners act; ranging from prompting patients to question unreasonable propositions or consider new propositions, to directive leadership whereby practitioners recommend options or deny requested procedures. In the context of ideas of relational autonomy, the objective of practitioner leadership is to protect patients’ autonomy by supporting good decision making, taking leadership in patients’ interests only when patients are unwilling or unable to make good decisions.     

The use of formal and informal knowledge sources in patients’ treatment decisions in secondary stroke prevention: qualitative study

Background There is robust empirical evidence to support clinical decision making in secondary stroke prevention after transient ischaemic attack (TIA) or recovered stroke. However, little attention has been paid to patients’ utilization of this evidence in coming to decisions about their treatment choices. Objective To examine the use of formal and informal knowledge by patients in making decisions about carotid endarterectomy (CEA) and medical treatment after TIA/recovered stroke. Setting and participants Twenty participants were recruited from an outpatient vascular surgical assessment clinic in England. Ten were receiving medical treatment alone, and 10 were undergoing CEA after TIA or recovered stroke. Method Twenty‐eight in‐depth qualitative interviews were conducted. An iterative approach was used whereby emergent themes were further explored in later interviews. Interviews were audiotaped, transcribed and coded. Results Participants gathered and utilized several types of knowledge in the process of making treatment decisions: Empirical knowledge (e.g. clinical trial findings); Pathophysiologic findings (e.g. results of clinical investigations); Experiential knowledge (e.g. personal experience of stroke); Goals and values (e.g. potential impact on family); System features (e.g. apparent urgency of treatment). Conclusions In addition to formal evidence, patients use other sources of informal or ‘non‐evidentiary’ knowledge to support their decisions about treatment after TIA or recovered stroke. To enable evidence‐based patient choice, health professionals need to appreciate the diverse types of evidence which patients use, to help them to access relevant and high‐quality evidence, to balance evidence from different sources and to make choices which are congruent with their values and expectations.     

The Role of Health Care Provider and Partner Decisional Support in Patients’ Cancer Treatment Decision-Making Satisfaction

Cancer patients rely on multiple sources of support when making treatment decisions; however, most research studies examine the influence of health care provider support while the influence of family member support is understudied. The current study fills this gap by examining the influence of health care providers and partners on decision-making satisfaction. In a cross-sectional study via an online Qualtrics panel, we surveyed cancer patients who reported that they had a spouse or romantic partner when making cancer treatment decisions (n = 479). Decisional support was measured using 5-point, single-item scales for emotional support, informational support, informational-advice support, and appraisal support. Decision-making satisfaction was measured using Holmes-Rovner and colleagues’ (1996) Satisfaction With Decision Scale. We conducted a mediated regression analysis to examine treatment decision-making satisfaction for all participants and a moderated mediation analysis to examine treatment satisfaction among those patients offered a clinical trial. Results indicated that partner support significantly and partially mediated the relationship between health care provider support and patients’ decision-making satisfaction but that results did not vary by enrollment in a clinical trial. This study shows how and why decisional support from partners affects communication between health care providers and cancer patients.     

Practical issues in assisting shared decision‐making

To facilitate treatment decision‐making, one aims to provide information, present it in a way that makes it as easy as possible to understand, and to help the decision‐maker through the cognitive processes that result in a treatment decision. Decision aids aim to accomplish just these goals and this paper identifies practical issues that we have encountered in creating a decision aid for men with early stage prostate cancer. We highlight the results of studies we carried out to provide an empirical basis for the decision aid that we were developing. Several of the studies were designed to identify what information key players (health professionals, patients and family members) thought was important for the decision‐making process. Another investigation studied methodological considerations in identifying important information. The final study focused on presentation issues. These studies, designed to explore what information was considered important, found great variability among both health care professionals involved in treating patients with prostate cancer (urologists, radiation oncologists, nurses in cancer clinics, and radiation technologists) and among the patients, themselves. The studies also showed that not all information contained within a typical category is of equal importance. A methodological study showed that the information that patients deem to be important to their decision depends on whether they are rating the information that could be provided, or questions that could be answered. Finally, presentation studies showed that the various formats used in presenting quantitative information are processed with differing degrees of accuracy and ease. Each of the above results has implications for those creating decision aids; these implications are highlighted.     

A matter of trust – patient's views on decision-making in colorectal cancer

Objectives To determine which aspects of the treatment decision process, therapy and outcomes are most important to patients with colorectal cancer (CRC). Design Cross‐sectional survey. Participants A total of 102 men and 73 women who had completed primary treatment for CRC in two teaching hospitals in Central Sydney, Australia. Main outcomes measures Patient's rating of the importance of the decision‐making aspects and outcomes of treatment for CRC. Results Trust in their surgeon and confidence of specialty training are of paramount importance to CRC patients. Patients also have a strong desire to get on with treatment quickly and rate the risk of disease recurrence and quality of life as being very important in their treatment decisions. Gender, age and whether the patient had undergone adjuvant radiotherapy were all significant predictors of preferred mode of treatment decision‐making. Fifty‐eight per cent of women preferred a shared decision‐making role compared with 36% of men, whilst older patients and those who had undergone adjuvant radiotherapy were significantly more likely to prefer that their surgeon decide upon treatment when compared with younger patients and respondents who have not had radiotherapy. Conclusions Regardless of whether a patient prefers an active or more passive role in decision‐making, having a surgeon explain treatment options in a clear, unhurried and open manner is vital to how patients feel about their treatment. Whilst acknowledging that individual patients will have different needs for information and preferences for treatment, there are several factors amongst many in the process of decision‐making which are considered very important by patients with CRC. A surgeon who adopts a consultation style that is open and informative, that offers patients the chance to participate in the process of decision‐making and clearly explain treatment options and outcomes will engender trust with their patient.     

Assessing patients’ involvement in decision making during the nutritional consultation with a dietitian

Background Shared decision making (SDM) represents an interesting approach to optimize the impact of dietary treatment, but there is no evidence that SDM is commonly integrated into diet‐related health care. Objective To assess the extent to which dietitians involve patients in decisions about dietary treatment. Methods We audiotaped dietitians conducting nutritional consultations with their patients, and we transcribed the tapes verbatim. Three trained raters independently evaluated the content of the nutritional consultations using a coding frame based on the 12 items of the French‐language version of the OPTION scale, a validated and reliable third‐observer instrument designed to assess patients’ involvement by examining specific health professionals’ behaviours. Coding was facilitated by the qualitative research software NVivo 8. We assessed internal consistency with Cronbach’s alpha and inter‐rater reliability with the intraclass correlation coefficient (ICC). Results Of the 40 dietitians eligible to participate in the study, 19 took part. We recruited one patient per participating dietitian. The overall mean OPTION score was 29 ± 8% [range, 0% (no patient involvement in the decision] to 100% [high patient involvement)]. The mean duration of consultations was 50 ± 26 min. The OPTION score was positively correlated with the duration of the consultation (r = 0.65, P < 0.01). Internal consistency and inter‐rater reliability were both good (Cronbach’s alpha = 0.72; ICC = 0.65). Conclusion This study is the first to use a framework based on the OPTION scale to report on dietitians’ involvement of patients in decisions about patients’ dietary treatment. The results suggest that involvement is suboptimal. Interventions to increase patients’ involvement in diet‐related decision making are indicated.     

Financial Conflicts Facing Late‐Life Remarried Alzheimer’s Disease Caregivers*

Abstract: This qualitative study explores financial conflicts faced by late‐life remarried wives providing care for their husbands with Alzheimer’s disease. Interviews with 9 women identified intergenerational secrets and tensions regarding financial and inheritance decisions. Participants’ remarried spouse status, underlying family boundary ambiguities, and changing realities brought on by the onset of Alzheimer’s disease all appear to contribute to intergenerational tension over financial decisions. Findings suggest that remarried older couples with chronic health issues may be at additional financial and psychological risk, especially in the caregiving role. Future research, intervention, and policy should anticipate and address the special needs of remarried and stepfamily members to support their efforts to successfully manage the health and caregiving concerns associated with Alzheimer’s disease.     

Factors Influencing Men’s Decisions Regarding Prostate Cancer Screening: A Qualitative Study

Shared decision making is recommended before prostate cancer screening. Little is known regarding reasons why men choose to get or not get prostate cancer screening, particularly in white or Hispanic men. We conducted semi-structured in-depth interviews of 64 men, age 50 years and over, purposively sampled from men who were never screened for prostate cancer or who screened abnormal in northern New Jersey. Qualitative analysis was iterative using a grounded theory approach involving a series of immersion/crystallization cycles. Men who had abnormal PSA tests either actively sought out screening because of family history of prostate cancer or received their screening as part of a routine physical examination. Men who were never screened avoided testing primarily because they perceived they were at low risk due to lack of urinary symptoms, lack of family history of prostate cancer, or beliefs that healthy behaviors can prevent prostate cancer. Other reasons for not getting screened included: fear of cancer, embarrassment over digital rectal exam, confusion over the screening procedure, and skepticism over the benefits of screening. Some men were willing to get screened if structural barriers were removed, their doctor recommended it, or if they were prompted by urinary symptoms. None had discussions with physicians about potential risks of prostate cancer screening. Men received their health information through lay media, friends or family members. Educating men in the community through mass media about benefits and limitations of prostate cancer screening may be more effective to promote and facilitate shared decision making with their physicians.     

The role of perceived benefits and costs in patients’ medical decisions

Background Many decisions can be understood in terms of actors’ valuations of benefits and costs. The article investigates whether this is also true of patient medical decision making. It aims to investigate (i) the importance patients attach to various reasons for and against nine medical decisions; (ii) how well the importance attached to benefits and costs predicts action or inaction; and (iii) how such valuations are related to decision confidence. Methods In a national random digit dial telephone survey of U.S. adults, patients rated the importance of various reasons for and against medical decisions they had made or talked to a health‐care provider about during the past 2 years. Participants were 2575 English‐speaking adults age 40 and older. Data were analysed by means of logistic regressions predicting action/inaction and linear regressions predicting confidence. Results Aggregating individual reasons into those that may be regarded as benefits and those that may be regarded as costs, and weighting them by their importance to the patient, shows the expected relationship to action. Perceived benefits and costs are also significantly related to the confidence patients report about their decision. Conclusion The factors patients say are important in their medical decisions reflect a subjective weighing of benefits and costs and predict action/inaction although they do not necessarily indicate that patients are well informed. The greater the difference between the importance attached to benefits and costs, the greater patients’ confidence in their decision.     

African American and non-African American patients' and families' decision making about renal replacement therapies

We conducted focus group meetings of African American and non-African American patients with end-stage renal disease (six groups) and their family members (six groups), stratified by race/ethnicity and treatment. We elicited differences in participants' experiences with shared decision making about initiating renal replacement therapy (RRT; that is, hemodialysis, peritoneal dialysis, or a kidney transplant). Patients were often very sick when initiating RRT, and had little, if any, time to make a decision about what type of RRT to initiate. They also lacked sufficient information about alternative treatment options prior to initiation. Family members played supportive roles and shared in decision making when possible. Reports were similar for African American and non-African American participants. Our findings suggest that a greater emphasis on the improved engagement of patients and their families in shared decision making about RRT initiation is needed for both ethnic/racial minorities and nonminorities.     

Trials of decision aids for prostate cancer screening: a systematic review

BACKGROUND: Patient decision aids are used to promote informed decision making. This review examines the methods and findings of studies that have evaluated the impact of prostate cancer screening decision aids on patient outcomes. METHODS: MEDLINE, the Cochrane Registry, reference lists, and abstracts from professional meetings were searched through December 2006. Search terms included prostate cancer screening and decision making. Studies were included if a patient education intervention for prostate cancer screening had been evaluated against a control condition. RESULTS: Eighteen eligible trials, involving 6221 participants, were identified. Sixteen studies enrolled primary care patients, while the remaining two studies were community-based. All the prostate cancer screening decision aids were in English, with varied reading levels. Consistent with previous reviews, the patient decision aids improved patient knowledge and made patients more confident about their decisions. The aids appeared to decrease interest in prostate-specific antigen testing and screening behavior among patients seeking routine care (relative risk [RR]=0.88, 95% confidence interval [CI]=0.81-0.97, p=0.008); the aids had no impact on the screening behavior of patients seeking screening services. Additionally, patients who received patient decision aids were more likely to prefer watchful waiting as a treatment option if they were found to have prostate cancer than were controls (RR=1.53, 95% CI=1.31-1.77, p<0.001). CONCLUSIONS: Prostate cancer screening decision aids enhance patient knowledge, decrease decisional conflict, and promote greater involvement in decision making. The absence of outcome measures that reflect all elements of informed decision making continues to limit the field.     

Effects of USPSTF guidelines on patterns of screening and treatment outcomes for prostate cancer

The updated United States Preventive Services Task Force(USPSTF) for prostate cancer in 2012 recommends against prostate-specific antigen(PSA) based screening for men of all ages. Prostate cancer is the second most common and second most deadly cancer in American men. PSA screening for prostate cancer has been present since 1994 leading to an over diagnosis and over treatment of low volume disease. There is an overall agreement of men towards the guidelines but even with the understanding of the USPSTF, these men tend to follow more personal beliefs that have been influenced by their knowledge of the disease process and physician influence. Physicians also followed the directions of the patients and opted not to change their current practice of PSA screening despite the new guidelines. Time, legal, and ethical issues were some of the barriers that physicians faced in tailoring their practice towards screening. The importance of informed consent is highlighted by both the patients and the physicians and clearly more effective when the patient was pre-informed of the disease processand prompted the physicians to initiate conversation of informed screening. Younger patients were inclined towards aggressive treatment and older patients opted towards watchful waiting both with emphasis on the importance of evidence-based information provided by the physician. Decision aids were useful in making informed decisions and could be used to educate patients on screening purposes and treatment options. However, even with well-created decision aids and physician influence, patients' own belief system played a major part in healthcare decision making in either screening or treatment for prostate cancer.     

Clinical decision‐making in the context of chronic illness

This paper develops a framework to compare clinical decision making in relation to chronic and acute medical conditions. Much of the literature on patient‐physician decision making has focused on acute and often life‐threatening medical situations in which the patient is highly dependent upon the expertise of the physician in providing the therapeutic options. Decision making is often constrained and driven by the overwhelming impact of the acute medical problem on all aspects of the individual’s life. With chronic conditions, patients are increasingly knowledgeable, not only about their medical conditions, but also about traditional, complementary, and alternative therapeutic options. They must make multiple and repetitive decisions, with variable outcomes, about how they will live with their chronic condition. Consequently, they often know more than attending treatment personnel about their own situations, including symptoms, responses to previous treatment, and lifestyle preferences. This paper compares the nature of the illness, the characteristics of the decisions themselves, the role of the patient, the decision‐making relationship, and the decision‐making environment in acute and chronic illnesses. The author argues for a different understanding of the decision‐making relationships and processes characteristic in chronic conditions that take into account the role of trade‐offs between medical regimens and lifestyle choices in shaping both the process and outcomes of clinical decision‐making. The paper addresses the concerns of a range of professional providers and consumers.     

Perspectives of self‐direction: a systematic review of key areas contributing to service users’ engagement and choice‐making in self‐directed disability services and supports

Self‐directed disability support policies aim to encourage greater choice and control for service users in terms of the health and social care they receive. The proliferation of self‐directed disability support policies throughout the developed world has resulted in a growing amount of research exploring the outcomes for service users, and their families and carers. Our understanding of the issues faced by people with disabilities, particularly how they make health and social care decisions and the key areas that determine their engagement with service providers within a self‐directed environment is limited. A synthesis of research is timely and can provide knowledge for service users and health and social care support providers to ensure their successful participation. A systematic review guided by the PRISMA approach explored (i) the key areas determining service users’ engagement with self‐directed disability services and supports, and (ii) how service users make informed decisions about providers. In October 2014 and April 2016, three databases – MEDLINE, CINAHL and Web of Science – were searched for research and review articles. Eighteen sources met the search criteria. Findings were mapped into either: key areas determining service user engagement, or service users’ informed decision‐making. Findings concerning key areas determining engagement fell into three themes – personal responsibility for budgeting, personalised approaches, and a cultural shift in practice and delivery among service providers. Findings about decision‐making yielded two themes – supporting informed decision‐making and inhibiting informed decision‐making. Literature suggests that self‐directed models of care may provide service users with increased control over the services that they receive. Increased control for some service users and their families requires independent external decision‐making support, particularly around the domains of budgeting, planning and hiring. Future research must continue to investigate the perspectives of service users pertaining to their engagement, as their participation is central to the effectiveness of the approach.