Experience of Compassionate Care Provided by Personal Care Staff

The degree of compassionate care clients receive from personal home care staff may impact their overall experience with home and community care services. This is a summative score of Questions 45 to 49. Compassion was measured by the Sinclair Compassion Questionnaire-Short Form (SCQ-SF) a patient reported compassion scale that has undergone rigorous psychometric testing and has been linked to enhanced quality care ratings and improved patient experience. See the compassion measure website here and access more information. To access resources and training pertaining to compassion, click here.

Unmet Needs

The questions that make up the Unmet Needs driver are summarized into an average of clients who responded Yes to Question 55 and No to Question 56 or Question 57. As a result, prioritizing questions for this driver and reporting top-box and bottom-box results is not relevant. Clients could describe their unmet needs in response to Question 55B: In the last 6 months, was there any service of any kind that you felt you needed but didn’t get. They were asked to consider any other services that they may have needed that were NOT provided by a government home care program (e.g. Alberta Health Services home care), such as yard work or grocery delivery. These may have been services clients have to pay for, or services provided by family, friends, or volunteers for free. The top unmet service needs identified in client comments are summarized alongside survey results to provide further context towards identifying opportunities for improvement. See the Appendix for a complete list of unmet service needs identified across all the comments.

Top unmet service needs described by clients

The primary goal of home and community care is to support clients to remain living at home independently for as long as possible, if they so choose. In support of this, it is valuable to consider what enables or hinders clients to do so. Clients’ responses to Question 55B: In the last 6 months, was there any service of any kind that you felt you needed but didn’t get, provide some insights.

Clients identified three top unmet service needs in response to Q55B, regardless of client type, client age, and the zone and geographic location. In alphabetical order, these are grocery shopping, groundskeeping, and housekeeping. These are consistent with the top unmet service needs identified in the 2018 Alberta Seniors Home Care Client Experience Survey. While currently out of scope of the Alberta home and community care program, these needs are social determinants of health and reflect necessary at-home-responsibilities. Social determinants of health are those social and economic factors such as income, education, culture, gender, and childhood experiences that influence individual and population health.

When clients found it difficult to meet these needs, some could rely on the essential support of family or friends or pay for private services. However, not all clients have access to the social capital (i.e., the resources a person has access to through their social networks) or financial resources needed to meet these needs or sustain them in the long-term. Services are not always affordable nor available within their communities. For example, housekeeping services are not always available within rural areas and grocery delivery services are scarce in small towns or locations outside municipalities. Without this support clients expressed they are at risk of being unable to stay in their homes.

“Staying in my own home does require family or other hired help to do yard work and home maintenance, as well as heavier housekeeping.”

“These are services required by my household. I am not able to do any of these things. My [family member] does them. If my [family member], who has [their] own mobility and health issues, did not do these things for me, I would not be able to stay in my own home. 1. Household help with cleaning and things such as changing sheets and making the bed. 2. Grocery delivery. 3. Yard work. 4. Driving to health-related appointments. 5. Cooking meals.”

“I am looking into going into a home right now at the age of [age] because I just cannot handle the expense of keeping this house clean or doing any needed yard work. I am absolutely dreading this, but I have no other options.”

These findings highlight the importance of considering clients’ whole person needs within the home and community care program, as clients’ health and wellness encompasses their physical, mental, emotional, spiritual, and socio-economic needs. This requires bridging gaps between health, social, and community services, as well as efforts to enhance people-centred care.

To help prioritize opportunities for home and community care, more details about clients’ needs with grocery shopping, groundskeeping, and housekeeping are provided:

Grocery shopping

Clients expressed the need for grocery shopping for food and other necessities and delivery to their homes. Some clients also need help carrying groceries into their home and putting groceries away.

“I [have a medical condition] and I live in a small town that doesn't offer grocery delivery. I would have benefited from a grocery delivery service or if grocery outings were part of my funding.”

“Unable to fetch or carry our own groceries.”

Groundskeeping

Clients need support to maintain their yards by cutting grass, controlling weeds, pruning hedges, and raking leaves. To adhere to municipal bylaws, clients also identified a need for removing snow to provide safe access for themselves and pedestrians.

“I cannot go out in the garden or cut my grass myself. I have to get my neighbors, friends or my [family member] to do it for me and I would love to have these services through my healthcare plan. I cannot afford to pay anyone for these things.”

“Snow clearance, so I can get to my vehicle safely to travel to home care appointments, other appointments, or to get prescriptions and groceries during the winter … Yard work is done solely by my [family member]. [My family member] works more than [a number of] hours a week, and if we don't want to get a fine, [they have] to complete all the yard work on time by [themselves]. This has caused [them] to suffer greatly, and I cannot do anything about it.”

Housekeeping

To support clients’ wellbeing, light and deep house cleaning is needed. Specifically, dusting; washing dishes; bedding changes; cleaning floors, walls, windows, or cupboards; and waste and recycling disposal. Kitchen and bathroom areas are most in need of cleaning support.

“I sometimes need help with my housekeeping chores. These are paid services and are way out of my budget. Therefore, my home is not as clean as I would like. I worry about how this lack of cleanliness affects my health.”

“Need help with house cleaning but unable to find anyone nearby.”

Additional top unmet service needs.

Four additional commonly reported unmet service needs are summarized and outlined in alphabetical order below. As with the top unmet service needs, these are consistent with unmet needs identified by clients in response to the 2018 Alberta Seniors Home Care Client Experience Survey. Addressing these additional unmet needs may also help with supporting clients’ health, wellbeing, and independence.

Equipment and supplies

Timely and affordable access to equipment, supplies, and home modifications is needed to support clients’ safety and independence. Clients most often reported needing mobility equipment such as canes, lifts, ramps, walkers, scooters, and wheelchairs. Some need oxygen, bandages, compression stockings, incontinence supplies, and urology and ostomy supplies. Some others need home modifications like grab bars, railings, walk-in showers, or bathing supports.

"It is almost impossible to contact an OT in order to get approval to get equipment or the [sic] have equipment repaired. Even after approval through [program] there is a [number of] months to a year waiting list. Services are provided in a ‘first come first served’ basis rather than a triage system where people who really need help can receive it rather than having to wait for months."

"Need a chair lift but no subsidy for it, that’s awful. If we have to stay home, we need all the help we can get to more around easier."

"I cannot afford to make renovations to my home to make it easier/safer to stay at home…a grant is what is required. This would be cheaper than putting me into long term [care], especially when there are not enough beds/staff to care for me.”

Meal making

Clients need help with meal planning, preparation, and cooking. A small number of clients desire support with meal assistance, currently within scope of the home and community care program, like reheating pre-cooked or frozen food. Notably, most want home and community care to expand its scope to prepare fresh and nutritious meals. Meal making is a long-term need for some, and short-term need for others, particularly if needed to support wellness and recovery after an acute illness or injury. Some clients also rely on family members to bring them food or prepare meals, and others pay privately for this support.

"The meal preparation is severely limited (microwave only) and such very limited time, with no help for fresh fruits or salads or no companionship for eating. If the goal is truly to keep people at home, AHS needs to provide their services allowing more time for people to feel truly cared for."

"Cooking a proper meal other than heating frozen dinners in the microwave."

"I had to pay people to make meals for me because home care is not allowed to make meals.”

Therapies and exercise

Timely assessment of, and access to physiotherapy is needed for clients to manage pain, promote healing, and to improve or maintain mobility, strength, and balance to move safely and independently. For some clients, in-home access to these services is important; however, most clients simply desire home and community care to provide sufficient approved hours and full financial coverage for these services.

Clients aged 65 and older want access to physiotherapy pre- and post-operatively to facilitate recovery and post-discharge from hospital following a medical event to facilitate optimal and ongoing recovery. Other therapies clients reported they need include: exercise, physical therapy, massage therapy, and occupational therapy.

"Physiotherapy to encourage mobility to [be mobile] after [a medical procedure]."

"I needed to continue my physio after I came out of the hospital, but it was [a number of] months before the case manager organized my physio assessment and by then I had weakened enough that the pain was worse, and they said physio wouldn't help me. It was very frustrating."

"[Medical condition] recovery services e.g., occupational, physio, recreational therapy. These services ended [a period of time] after [a previous medical condition] but the impacts of [the medical condition] are chronic!”

Transportation

Clients require accessible, reliable, and affordable transportation, especially to and from medical appointments for the benefit of their health and wellbeing. Rural clients need to travel far distances out of town to other areas or cities, and the areas in which they live might not have public transportation. Transportation is also needed for clients to engage in socialization and to participate in their community. In general, clients’ friends and family play a critical role in meeting their transportation needs. Otherwise, clients pay privately for this support, sometimes at great expense. As a result, some clients desire financial coverage for the cost of travel.

"There’s appointments I can't attend, which is impacting my health. Please find a resource for this."

"I live alone. I have no family. I have needed help to attend some medical specialists, and homecare doesn't have help for this. I live in a small community and there's no public transportation."

"Getting to doctors’ appointments in [city] or even [place] was very challenging. I have no family here and had to rely on the kindness and availability of friends or spend [a dollar amount] for return taxi fare.”

Experience with Care Planning and Case Management

Experience with Professional Care Services

Experience of Compassionate Care Provided by Professional Care Staff

This is a summative score of Questions 28 to 32. Compassion is measured by the Sinclair Compassion Questionnaire-Short Form (SCQ-SF) a patient reported compassion scale that has undergone rigorous psychometric testing, and has been linked to enhanced quality care ratings and improved patient experience. See the compassion measure website here and access more information. To access resources and training pertaining to compassion, please click here.