Filling In: Family Member Support for Nonrelative Residents in Long-Term Care Homes.

BACKGROUND AND OBJECTIVES: Past research about family involvement in long-term care (LTC) homes mainly focuses on family members' involvement with their own relative, interactions with staff, and collective activities such as Family Councils. Our research provides novel insights into family member's involvement in the care of residents who are not their relatives, an area that has not previously been explored. RESEARCH DESIGN AND METHODS: This critical ethnographic study examined ways that family members negotiate and navigate their roles within LTC homes. Data collection and analysis took place at 3 LTC homes in British Columbia, Canada, between 2014 and 2018. Data were collected through participant observation and semistructured interviews. Eleven family member participants shared experiences of caring for residents who were not their relatives. RESULTS: The umbrella theme was "filling in," which takes place in a care environment that is understaffed and underresourced. The subthemes reflect the various ways that families are "filling in": responding to resident's needs, supporting staff to respond to resident needs, and filling in for residents' families. DISCUSSION AND IMPLICATIONS: Caring for residents who are not their relatives is facet of family involvement in LTC homes that has not been previously explored. Many family members have expertise in providing person-centered care and they extend this expertise to residents who are not their relatives. Policies and legislation are needed to formalize family involvement in caring for nonrelative residents as it is a component of quality of care for all residents.

Older adults experiences of using recreational cannabis for medicinal purposes following legalization.

BACKGROUND AND OBJECTIVES: Legalization of recreational, or non-medical, cannabis in Canada in 2018 was followed by significant increase in use among older adults. Non-medical cannabis is often used medicinally in this population for issues such as pain, insomnia, and appetite stimulation. The purpose of this study was to explore new cannabis use among older adults within an evolving socio-legal context. RESEARCH DESIGN AND METHODS: Normalization theory provided the theoretical foundation and qualitative description was the guiding methodology. A convenience sample of twelve participants (ten women, two men) aged 71 to 85 years old was recruited. Data were collected using semi-structured interviews and analyzed thematically. RESULTS: Findings illustrate factors that influenced participants' beliefs and contributed to their decisions to begin using cannabis in later life. The most important factor was legalization, which sparked a shift in beliefs around using cannabis and shaped the beginning of de-stigmatization around using this substance. Increasing acceptance in their social networks and visibility of cannabis in the media also informed decision-making. However, using cannabis for non-medicinal or social reasons remained stigmatized. DISCUSSION AND IMPLICATIONS: This research indicates that older adults' beliefs about cannabis use are shifting and this is likely related to legalization and broader social acceptance of cannabis. As a consequence, increased public health education is needed to improve health literacy about cannabis use during this stage of the life-course.

A Survey of the Characteristics and Administrator Perceptions of Family Councils in a Western Canadian Province.

Family Councils are independent, self-determining groups composed of family members (inclusive of friends) who have assembled with the main purpose of protecting and improving the quality of life of those living in long-term care (LTC) homes. This study aimed to describe the prevalence and characteristics of Family Councils in British Columbia, Canada. We conducted a cross-sectional survey with administrators of 259 homes and received 222 usable surveys. Of the 151 LTC homes that had Family Councils, it was most common for the homes to be larger (>50 residents), accredited, privately owned, and located in urban areas. Perceived barriers to Family Councils included lack of interest, tendency to focus on individual complaints, and the transitory nature of families. Perceived benefits of Family Councils included enhanced communication between staff and families, peer support, and collective advocacy. Recommendations focus on enhancing accessibility, information sharing, and meaningfulness of Family Councils to improve family engagement.

Exploring New Use of Cannabis among Older Adults.

Objectives: In Canada, cannabis prohibition ended in October 2018. Older adults are the fastest growing group of cannabis users and are out-pacing other groups as new users. Clinical evidence indicates that cannabis may be helpful for select medicinal purposes in this population. Yet there is limited research about older adults experiences of starting to use cannabis in later life. The purpose of this study was to begin to address this gap. Methods: This study employed qualitative description. A convenience sample of Canadian community-dwelling older adults who were new users of cannabis were recruited. Data were collected using semi-structured interviews. Data analysis was inductive and thematic. Results: Twelve older adults between the ages of 71 and 85 participated. All of the participants used cannabis for medicinal reasons, however, only one had a prescription. The main reasons for using were: pain management, alternative to prescription or over-the-counter medication, and sleep aide. Most participants obtained cannabis from non-licensed stores. Eleven discussed cannabis use with their family physicians, however, none received prescriptions from them. The main sources of information were friends, cannabis store staff, and the media. Conclusions: Older adults who begin using cannabis are likely using for what they perceive to be medicinal purposes for a range of issues. However, they receive minimal guidance from their family physicians and instead obtain information from non-clinician sources. Clinical implications: Cannabis screening should be included in geriatric assessments and medicine reconciliation. Continuing education for clinicians needs to address knowledge gaps about cannabis use among older adults.

Alone in a Crowd? Parents of Children with Rare Diseases' Experiences of Navigating the Healthcare System.

A disorder is considered a rare disease if it affects 1 in 2000, hence, while independently unique, collectively, these conditions are quite common. Many rare diseases are diagnosed during childhood, and therefore parents become primary caregivers in addition to their parental role. Despite the prevalence of rare diseases among children, there has been little research focused on parents' experiences of navigating the healthcare system, a gap we begin to address in this study. Guided by an interpretive description methodology, participants were recruited through online listservs and posting flyers at a pediatric hospital in Western Canada. Sixteen parents (15 mothers and 1 father) participated in in-depth, semi-structured interviews between April 2013 and March 2014. Data were analyzed inductively, generating the main study themes. Findings illuminated the challenges parents' experienced on their child's diagnostic journey-from seeking, to receiving, to adjusting to the rare disease diagnosis. Following diagnosis, gaps, and barriers to services resulted in parents pursuing services that could support their child's unique care needs, which often resulted in out-of-pocket payments and changes to employment. Parents found peer support, both online and in person, to be an effective resource. This study illustrates the common challenges experienced by parents of children with rare diseases as they navigate the healthcare system. Parents' role as "expert caregiver" was rarely acknowledged by healthcare providers, pointing to the need to foster more egalitarian relationships. As well, parents were burdened with the additional role of care coordinator, a role that could be filled formally by a healthcare provider. Lastly, peer support was a key resource in terms of information and emotional support for parents who often begin their journey feeling isolated and alone. Policies and programs are needed that validate the invisible care work of parents and ensure adequate formal supports are in place to mitigate potential sources of inequity for these families. Furthermore, genetic counselors can play a key role in ensuring parents' informational needs are addressed at the time of diagnosis and in connecting families who share common experiences regardless of the rare disease diagnosis.