Current and ideal living arrangements and supports for Canadian adults with fetal alcohol spectrum disorder (FASD)-Part I: Perspectives from adults with FASD.

BACKGROUND: Adults with fetal alcohol spectrum disorder (FASD) can thrive with lifelong support in daily living activities. Previous research examining living support for adults with FASD has heavily relied on caregiver reports rather than lived experiences, which can undermine opportunities for self-determination. In this study, we examined the perspectives of adults with FASD to better understand: (1) the ways in which they are supported with daily life activities; and (2) their ideal future living arrangements and supports. METHODS: This article presents findings from the perspective of adults with FASD as part of a broader project involving both adults with FASD and the caregivers who support them. Interviews were conducted with four Canadian adults with FASD who live in housing with supportive services and seven adults with FASD who live at home with the support of caregivers. Framework analyses, a structured approach to analyzing qualitative data, were used to examine participants' perspectives. RESULTS: In addition to providing support for previous findings, participants provided novel information regarding: (1) their daily living supports; (2) positive and negative aspects of their arrangements; and (3) ideal living environments and supports. CONCLUSIONS: This study offers insight into participants' perspectives regarding their living support, which is critical to inform housing and aid in self-determination. Areas of support outlined by participants can be used to begin conversations regarding the support required in housing arrangements for adults with FASD.

Current and ideal living arrangements and supports for Canadian adults with fetal alcohol spectrum disorder: Part II-Perspectives from caregivers.

BACKGROUND: Caregivers supporting adults with fetal alcohol spectrum disorder (FASD) report concerns regarding living arrangements and services for their adult children with FASD. Best practices for living support for adults with FASD are under-researched, and few studies have explored the experiences of caregivers whose children are adults. This study examined the perspectives of caregivers who support adults (18+) with FASD regarding: (1) current ways adults with FASD are supported with daily life activities; and (2) ideal future living arrangements and supports. METHODS: This article presents findings from the perspective of caregivers who support adults with FASD, as part of a broader project involving both adults with FASD and caregivers. Semi-structured interviews were conducted with 11 Canadian caregivers who live at home with an adult with FASD (aged 18+). Responses were examined using framework analysis, a structured approach to analyzing qualitative data. RESULTS: Caregivers described their experiences and perspectives regarding: (1) current ways adults with FASD are supported in their daily activities; (2) strategies for successful support; (3) ideal future living arrangements and supports; and (4) concerns for the future. Notably, almost every participant raised pressing concerns regarding the future living arrangements for the person they support once they are no longer able to provide care. CONCLUSIONS: This study explores caregivers' perspectives regarding living support needed by adults with FASD, which can inform support programs and housing services. Findings demonstrate an urgent need for policy change directed toward developing available, affordable, and appropriate housing for adults with FASD.

All in the Family: Living With ADNP Syndrome.

PURPOSE: The overarching purpose of this research was to examine the experiences of 1 family living with a child with Helsmoortel-Van Der Aa syndrome or activity-dependent neuroprotective protein (ADNP) syndrome. DESIGN: A retrospective qualitative design was used for this study. METHODS: Two primary caregivers for a 5-year-old child with ADNP syndrome completed background questionnaires to provide context for semistructured interviews. Each caregiver completed 2 interviews, approximately 2 months apart. Field notes, member checks, and triangulation were used to enhance the credibility of the study. RESULTS: This article summarizes the theme "All in the Family." Having a child with ADNP syndrome affected all aspects of family life. Participants revealed that family dynamics were shaped by experiences stemming from their living arrangements and caregiving responsibilities. CONCLUSIONS: Findings from this research highlighted the need for increased support for families faced with ADNP syndrome, as well as the role clinical nurse specialists can play in the lives of caregivers faced with such a rare diagnosis. Furthermore, given the paucity of ADNP syndrome information, the need for more research is warranted.

"Sometimes Life Throws You a Curve Ball": The Lived Experiences of an Individual With Early-Onset Alzheimer's Disease and His Family.

INTRODUCTION: Individuals with early-onset Alzheimer's disease face many challenges and barriers older adults with late-onset Alzheimer's do not. Unfortunately, information about early-onset Alzheimer's disease is in its infancy stage in comparison with late-onset Alzheimer's. PURPOSE/AIMS: The purpose of this study was to examine the lived experiences of a 54-year-old man with early-onset Alzheimer's disease and his family (wife, sister, and mother) to understand the effects on the family unit. DESIGN: Interpretive phenomenology was used to guide this study. METHODS: All participants completed 2 in-person one-on-one interviews, and a final interview was completed online. Field notes, member checks, and triangulation were used to enhance the study's credibility. RESULTS: This article focuses on the theme "'A big curve ball': Disruption of the life cycle." Participants indicated the major financial and social challenges experienced by Joe and his wife. Furthermore, participants emphasized the importance of acceptance and maintaining a positive attitude to help cope with Joe's diagnosis. CONCLUSIONS: The accounts of Joe and his family shed light on an area relatively void in the literature. In addition, Joe's experiences may provide comfort for other families facing early-onset Alzheimer's disease. The implications for community health nurses in assisting individuals with early-onset Alzheimer's disease and their families are discussed.

"There Is No Before Cancer There Is Only Cancer." Perceived Late Effects of Pediatric Cancer on Survivors.

BACKGROUND: Although "late effects" connotes experiencing effects later in life, they can emerge immediately after active treatment. The effects that survivors experience have been reported but rarely from the point of view of the survivors regarding their life after treatment. OBJECTIVE: To examine the perceived late effects of pediatric cancer on survivors and their self-identified primary support persons in order to understand the multifaceted nature of living after a pediatric cancer diagnosis. METHODS: Using a pragmatic interpretive phenomenology approach, 10 survivors of pediatric cancer (aged 21-28 years) and 9 of their support persons (aged 23-73 years) participated, completing background questionnaires and semistructured, one-on-one interviews. Interview transcripts were analyzed thematically. RESULTS: Both survivors and support persons acknowledged that survivors experienced negative physical and cognitive health outcomes that require follow-up care. Survivors acknowledged that their cancer experience and residual effects have changed the trajectory of their lives. CONCLUSIONS: Research on young adult survivors of pediatric cancer and the residual/late effects and emotional outcomes they experience is warranted. Longitudinal research can aid in understanding how effects develop or worsen over time. IMPLICATIONS FOR PRACTICE: The findings of this study support The Children's Oncology Group Long-term Follow-up Guidelines for practitioners. As the frontline caring for these individuals and families, nurses' involvement in transitional care out of treatment is necessary. Continued involvement and understanding of long-term pediatric cancer survivorship for nurses are also imperative for continuity for survivors and families.

Having a Sibling with ASD: Perspectives of Siblings and Their Parents.

The overall purpose of this research was to explore the experiences of families living with a child with autism spectrum disorder (ASD). This paper reports the experiences of siblings of children with ASD, from the perspective of both siblings and parents. Using a phenomenological case study design, participants completed face sheets to provide context for one-on-one, semi-structured interviews, which were transcribed verbatim, and verified via member checks. Van Manen's (1990) selective approach was used for data analysis. Siblings and parents described that the children with ASD made their siblings the targets of their aggression, and siblings spent less time with parents the children with ASD required more attention. It was also acknowledged that the siblings were more mature as a result of having a sibling with ASD. Families acknowledged that the relationship between children with ASD and their siblings would not differ if their children did not have ASD. This work highlights the importance of examining the family as a unit to provide a multifaceted perspective of how having a child with ASD affects their siblings.

Scoping Review: Physical Activity and Social Functioning in Young People With Autism Spectrum Disorder.

Autism Spectrum Disorder (ASD) affects ~1 in 59 people in North America and diagnoses continue to rise (Center for Disease Control and Prevention, 2018). Unfortunately, the exact cause of ASD is unknown and therapy remains the primary means of intervention. People with ASD experience social and behavioral deficits associated with the disorder, which affect all aspects of life such as academics, relationships, and physical activity. Research has shown a relationship between physical activity and social skills in typically developing individuals; however, this relationship is less understood in people with ASD. The purpose of this scoping review was to uncover what is known about ASD, physical activity, and social functioning. The authors searched four databases and included 40 primary research articles in the review, most of which demonstrated a relationship between physical activity and social functioning for people with ASD. The relationship appears bidirectional: social functioning influences physical activity (to a lesser extent) and physical activity influences social functioning (to a greater extent). Regrettably, there were many limitations in these articles, such as small sample sizes and the under-representation of females and adults. Therefore, the review highlights several directions for future research.

Taking Lemons and Making Lemonade: Posttraumatic Growth From Pediatric Cancer.

PURPOSE: The purpose of this study was to examine the lived experiences of the perceived long-term effects of pediatric cancer on adult survivors and whether these effects had bearing on their primary support persons. DESIGN: This work was guided by van Manen's "new" interpretive phenomenology. METHODS: Ten survivors of pediatric cancer (aged 21-28 years) and 9 of their support persons (aged 23-73 years) were recruited. Background questionnaires were administered, and interviews were conducted. Field notes were collected, and member checks were administered for data credibility. RESULTS: A total of 4 themes emerged from this work; however, only the theme discussing posttraumatic growth will be discussed. Posttraumatic growth manifested in different ways, such as motivation for career or schooling choices, doing charity work, working with cancer organizations, or mentoring children undergoing pediatric cancer treatment. CONCLUSIONS: This work may provide comfort to other individuals with pediatric cancer knowing that they are not alone in their journeys. Healthcare providers should attempt to make pediatric cancer experiences as "normal" as possible for patients and their families and observe for signs of stress in their patients. As well, it is important for the pediatric cancer literature to illustrate that young adult survivors of pediatric cancer find positive outcomes in their experiences.

The Balancing Act: Mothers' Experiences of Providing Care to Their Children With Cancer.

The effect of pediatric cancer and its treatment are overwhelming-these effects are multifaceted and felt by the entire family unit throughout the diagnosis and treatment process. Children experience a plethora of effects as a result of the treatment process; however, it is imperative to remember that a pediatric cancer diagnosis affects parents physically, emotionally, and psychologically as well. While much of the pediatric cancer treatment occurs at the hospital or in clinics, parents are often faced with additional caregiving responsibilities at home, and in many cases, it is mothers who provide care to their children, while also attempting to care for the siblings of their ill children. This secondary data analysis examines the caregiving responsibilities of mothers from Southern Ontario, Canada, during the time from diagnosis to after their children's pediatric cancer treatment. Three subthemes emerged from the overall theme of caregiving: (1) "We tried to do as much as we could outside of the clinic," (2) "I had to be there for everything," and (3) "Most of the time we relied on other people." Each will be discussed in turn. The findings from this work provides insight to health care professionals on how to create or improve the current supports and resources provided to caregivers of children with cancer.

A Qualitative Investigation of the Self-Perceived Health Behavior Changes in Seniors After Their Transitions Into a Retirement Home.

PURPOSE/AIMS: It is important for seniors to engage in positive health behaviors to reduce the incidence of health-related consequences associated with aging. The purpose of this research study was to examine self-perceived changes in physical activity, nutrition, and alcohol consumption behaviors of seniors living in a retirement home through consideration of previous behaviors and self-perceptions of behavior changes. DESIGN: A qualitative research design was used for this study. METHODS: Semistructured one-on-one interviews were conducted with 9 Canadian women living in a retirement home. RESULTS: Two key themes, each with 3 subthemes, highlighted the various factors that influenced changes in health behaviors. The 2 themes consisted of (a) aging and adapting and (b) the transition: give a little to gain a lot. CONCLUSIONS: Participants' insights revealed the importance of maintaining a positive attitude, the influence of the social environment on health behaviors, and the nutritional sacrifices of retirement living. Future research should investigate ways in which nurses can assist seniors in enhancing health behaviors throughout transitions into retirement homes.

"It Just Is What It Is": The Positive and Negative Effects of Living With Inflammatory Bowel Disease and Irritable Bowel Syndrome.

PURPOSE: This study aimed to explore the lived experiences of women diagnosed with inflammatory bowel disease and/or irritable bowel syndrome enrolled in postsecondary education. METHODS: Nine women aged 18 to 26 years participated in this study. Data collection consisted of an informed consent form, a background questionnaire, and a semistructured one-on-one interview. This interview explored the lived experiences of these individuals regarding perceived positive and negative effects of living with these conditions. RESULTS: Salient themes that emerged from the data were (1) "It can add to my life," (2) "Why me?: My condition runs my life," and (3) "I'm doing the best I can with what I have." Themes 1 and 2, the themes addressed in this article, were subdivided into (1) change in perception of self, condition, and others and (2) healthy lifestyle and (1) unpredictability and inconsistencies of inflammatory bowel disease/irritable bowel syndrome, (2) lack of understanding, and (3) the inconvenience of inflammatory bowel disease/irritable bowel syndrome, respectively. All participants expressed both positive and negative effects of living with their conditions. CONCLUSION: Community health nurses should be aware of the positive and negative effects of living with these conditions to help build relationships and assist with condition management. Other implications are discussed.

Who is a survivor? Perceptions from individuals who experienced pediatric cancer and their primary support persons.

PURPOSE: The purpose of this research was to examine the lived experiences of individuals who had cancer as children, as well as lived experiences of their current primary support persons. METHODS: Based on van Manen's "new" interpretive phenomenology, interviews were conducted with ten pediatric cancer survivors and nine of their support persons to gain a more holistic understanding of the pediatric cancer experiences of children and their families. RESULTS: Four themes emerged from the data; however, only the topic of the use of the term "survivor" and identification with the term will be discussed. All participants in the study described their personal definition of the term survivor and what it meant to be a survivor. Additionally, all individuals in the study discussed the concept of being a survivor and if they would consider themselves, or their loved ones, to be "survivors." CONCLUSIONS: The results of this study provide health care professionals, family members, and individuals fundraising or advocating for cancer causes with insights on how the term survivor may be interpreted. This study may provide insight to individuals who had cancer as children, in showing that their personal perspective shapes their identity; although "survivor" is common cancer vernacular, individuals can choose not to identify with their illness experiences.

"It Changed Everything. And Not All in a Bad Way": Reflections of Pediatric Cancer Experiences.

Pediatric cancer, otherwise known as childhood cancer, is devastating to both children and their families. All individuals in a family are often physically, psychologically, and socially affected. Using the qualitative theoretical orientation of interpretive phenomenology, interviews were conducted with 10 pediatric cancer survivors and 9 of their support persons to gain a more holistic understanding of the pediatric cancer experiences of children and their families. A total of 4 themes emerged from the data, however only the past experiences of the survivors and their recollection of their pediatric journeys will be discussed. Survivors experienced a variety of negative effects during and after treatment, while their support persons explained the emotional upheaval they experienced while caring for their children. Further, all individuals recalled positive memories throughout their journeys. The results of this study provide health care professionals and school administrators with insight into how to manage the difficult transitions children with cancer face when returning to school after cancer diagnosis and/or treatment. As well, this study may allow others undergoing similar journeys to relate to the lived experiences of the participants in this work.

"One Flare at a Time": Adaptive and Maladaptive Behaviors of Women Coping With Inflammatory Bowel Disease and Irritable Bowel Syndrome.

PURPOSE: The purpose of this investigation is to study the lived experiences of female postsecondary students diagnosed with inflammatory bowel disease and/or irritable bowel syndrome. METHODS: Nine women between the ages of 18 and 26 years were recruited to participate in this study. Participants completed an informed consent form and background questionnaire before completing a semi-structured one-on-one interview. This interview explored the lived experiences of these individuals in relation to condition management. RESULTS: Three salient themes that emerged from the data included (1) it can add to my life; (2) why me: my condition runs my life; and (3) I'm doing the best I can with what I have. The salient theme of I'm doing the best I can with what I have, the theme addressed in this article, was subdivided into adaptive and maladaptive coping behaviors. Reasons for the use of these behaviors included to avoid triggers or flare-ups/harmful effects, to achieve instant relief/pleasure, to respond to environmental pressures, and to become accustomed to dealing with the everyday hassles of their conditions. CONCLUSION: Community health nurses may become part of the solution to help women with inflammatory bowel disease and irritable bowel syndrome find more adaptive coping behaviors. Other implications are discussed.

Raising a child with special needs: the perspective of caregivers.

PURPOSE: Among Canadian children 14 years or younger, an estimated 202 350 (3.7%) are currently diagnosed with a disability. Because of the amount of care and attention children with disabilities require, parents of these children may also experience tribulations. For the sake of this article, tribulations refer to difficulties. Therefore, the purpose of this research was to examine the lived experiences of caregivers of children with disabilities. DESIGN: A qualitative approach, more specifically phenomenology, was utilized to guide this research. SAMPLE: Eight participants (5 biological mothers, 2 adoptive mothers, and 1 father) were recruited from a facility in Southern Ontario that serves children with physical and developmental disabilities. METHODS: Background questionnaires were completed, and 1-on-1 semistructured interviews were conducted with 8 caregivers of children with disabilities. RESULTS: The following themes emerged: (1) life as a caregiver, (2) impact on siblings as perceived by the parents, and (3) changes as a result of having a child with disabilities. This article addresses only the theme "life as a caregiver." CONCLUSION: Overall, the research study revealed the lived experiences of raising a child with special needs by specifically focusing on the lives of caregivers. Despite the many difficulties encountered, caregivers identified positive aspects associated with raising a child with special needs and the coping mechanisms that assist them in managing their stressors. IMPLICATIONS: This research study provides valuable information regarding the lived experiences of caregivers of children with special needs. It may assist other individuals in similar situations by providing comfort knowing that they are not the only ones encountering this journey. It may also allow them to look at their life story with a more positive outlook. It can offer these individuals with coping mechanisms that may assist them in dealing with their stresses. Lastly, it contributes to research that examines the lives of caregivers of children with disabilities by relying on the voice of the caregivers.

Balancing my disease: women's perspectives of living with inflammatory bowel disease.

AIMS AND OBJECTIVES: The purpose of this research was to examine the lived experiences of women with inflammatory bowel disease, by specifically exploring their management of their illness after diagnosis. BACKGROUND: Inflammatory bowel disease is a chronic autoimmune disease that has no known cause or cure. It is composed of two types of conditions: Crohn's disease and Ulcerative Colitis which have similar signs and symptoms, but have distinct physiological properties. Currently, Canada has the highest reported prevalence and incidence rates of inflammatory bowel disease in the world (Molodecky et al. 2012). Despite these increasing rates, there is a lack of knowledge and understanding of the burdens associated with inflammatory bowel disease, in particular from the participant's perspective. DESIGN & METHODS: Heuristic phenomenology was the theoretical orientation used for this study. Eight women (aged 30-50 years) with inflammatory bowel disease who resided in Southern Ontario were recruited. Each participant completed background questionnaires and a one-on-one semi-structured interview. RESULTS: Several salient themes were identified; however, this paper will solely focus on one theme, balancing my disease. To achieve balance, the women described changing dietary behaviours, adjusting daily routines and managing symptoms through medications. These modifications were described as being important in controlling inflammatory bowel disease symptomatology on a day-to-day basis. CONCLUSION: There are many triggers for inflammatory bowel disease symptomatology. As such, the means in which those with inflammatory bowel disease manage their conditions varies. Participants discussed using a combination of strategies to control their condition. RELEVANCE TO CLINICAL PRACTICE: This information is important for patients living with inflammatory bowel disease, their support people, and healthcare professionals to identify various key strategies to improve the quality of life and well-being of those affected by inflammatory bowel disease. Furthermore, this research provided a voice to women diagnosed with inflammatory bowel disease by allowing them to openly convey their experiences of living with inflammatory bowel disease.

Data sharing between home care professionals: a feasibility study using the RAI Home Care instrument.

BACKGROUND: Across Ontario, home care professionals collect standardized information on each client using the Resident Assessment for Home Care (RAI-HC). However, this information is not consistently shared with those professionals who provide services in the client's home. In this pilot study, we examined the feasibility of sharing data, from the RAI-HC, between care coordinators and service providers. METHODS: All participants were involved in a one-day training session on the RAI-HC. The care coordinators shared specific outputs from the RAI-HC, including the embedded health index scales, with their contracted physiotherapy and occupational therapy service providers. Two focus groups were held, one with care coordinators (n = 4) and one with contracted service providers (n = 6). They were asked for their opinions on the positive aspects of the project and areas for improvement. RESULTS: The focus groups revealed a number of positive outcomes related to the project including the use of a falls prevention brochure and an increased level of communication between professionals. The participants also cited multiple areas for improvement related to data sharing (e.g., time constraints, data being sent in a timely fashion) and to their standard practices in the community (e.g., busy workloads, difficulties in data sharing, duplication of assessments between professionals). CONCLUSIONS: Home care professionals were able to share select pieces of information generated from the RAI-HC system and this project enhanced the level of communication between the two groups of professionals. However, a single information session was not adequate training for the rehabilitation professionals, who do not use the RAI-HC as part of normal practice. Better education, ongoing support and timely access to the RAI-HC data are some ways to improve the usefulness of this information for busy home care providers.

The costs of caring for a child with an autism spectrum disorder.

BACKGROUND: The primary purpose of this exploratory autism research was to examine the lived experiences of female primary caregivers of children with an autism spectrum disorder (ASD). METHODS: Specifically the costs and benefits of the primary caregivers' experiences were examined through semi-structured one-one-one interviews. The specific focus of this paper was to examine the costs of caring for a child with an ASD, whereby costs did not refer solely to monetary costs, but were related to all aspects of the caregivers' lives. Interviews were completed with 8 mothers of children that had been formally diagnosed with an ASD. RESULTS: Undoubtedly all family members within the family unit were affected by a child's diagnosis with ASD as evidenced by the costs revealed by mothers. The subthemes derived from the theme of costs included the following: financial and work costs, costs to the health of family, social costs, and costs to overall family life. The results from this research provide evidence of the challenges associated with caring for a child with an ASD. CONCLUSIONS: It is anticipated that the insights provided by these mothers can act as a source of support for others faced with a similar situation. Additionally health care professionals may be able to use the knowledge gained from such qualitative endeavors in order to help parents cope more effectively with their caregiving responsibilities associated with children with ASDs. The mothers within this study are remarkable women that, for the most part, were able to rise above the negatives/costs associated with caring for a child with an ASD and find the silver linings amidst the turmoil. As remarkable as these women are in the daily struggles they face with their children, it is evident that more resources and support are required to assist these women and their families.

The role of medications in predicting activity restriction due to a fear of falling.

OBJECTIVE: To examine the role of medication use and other factors in predicting activity restriction due to a fear of falling (AR/FF). METHODS: Older adults were assessed twice with the interRAI Community Health Assessment and the Berg Balance Scale (BBS). The main outcome was limiting going outdoors due to an AR/FF. Medications were recorded by trained assessors. RESULTS: Participants (n = 441) had a mean age of 80.3 (SD = 7.1) years, most were aged 65+ (96.8%) and 29.3% reported activity restriction. Taking nervous system active or cardiovascular medications was associated with AR/FF. In a multivariate model, the main predictors were having 3+ comorbid health conditions, lower (i.e., worse) scores on the BBS, having difficulty with climbing stairs, and having a visual impairment. DISCUSSION: Modifiable risk factors, related to functional impairments, such as difficulties with balance and vision, appear to be more important predictors than medications.

My child has cancer: finding the silver lining in every mother's nightmare.

Having a child with cancer is one of the most taxing experiences a family can endure. With that in mind, the primary objective of this research was to explore the lived experiences of mothers of children with pediatric cancer during diagnosis, treatment, and the period thereafter. The specific purpose of this article however, was to examine the benefits or positives that emerged from the experience. One-on-one and e-mail semi-structured interviews were completed with 9 mothers of children treated for pediatric cancer. Four of the children had passed away from their illnesses. The subthemes derived for the benefits of the mothers' experiences consisted of: (1) support: importance of family and friends; (2) when life gives you lemons; and (3) finding the silver lining. It is anticipated that the findings from this exploratory research will be used as a source of support for individuals in similar situations and for front-line health care professionals.