Family Focus Group Results

Winter 2005 

 FOCUS GROUP RESULTS

METHODOLOGY

Two focus groups for families who had experienced the death of a child were held at the Western Pennsylvania School for Blind Children. The groups were conducted on different dates and at different times of the day to allow for maximal family participation.

The groups were facilitated by Dan Leger, pediatric RN, Forbes Hospice; and Yvonne Van Haitsma, consultant, Bayer Center for Nonprofit Management at Robert Morris University. Each group was two hours in duration.

A total of fifteen families participated in the focus groups.  

BACKGROUND RESEARCH

Number of children who die annually in the region

In Allegheny County

Children ages 0 – 19 (Average annual deaths years 1998 – 2003)

*(excluding accidents, homicides or suicide)            

Source:  Commonwealth of Pennsylvania Department of Health

 In the six county region (Allegheny, Beaver, Butler, Fayette, Westmoreland, Washington):

It is unclear how many of these deaths occur rapidly after diagnosis or entirely unexpectedly such that only bereavement services are needed.  Children’s Hospice International research estimates that 1/3 of all child deaths are caused conditions known to be life-limiting.[1]  In these cases, a more comprehensive set of palliative care services—respite, case management and hospice services—would be beneficial.  Applying this estimate to the Pittsburgh region, approximately 65 deaths per year in Allegheny County and 110 in the six county region could benefit from the full spectrum of palliative care. 

Children’s Hospital of Pittsburgh has about 120 children die each year.

Age of death*

 * PA; Health Statistics and research

From the hospital discharge data, 1,811 children ages 0-4 years in North Carolina were identified as medically fragile (0.32%)[2]. Applying this percent to the number of children 0-4 in Allegheny county, 235 children would be considered medically fragile.  Also, every year 400,000 children nationwide are diagnosed with life-threatening illnesses.  Of these diagnoses, approximately 75,000 to 100,000 children die.  If these national percentages are applied to Allegheny County, it would translate to 1500 children diagnosed annually.

DEMOGRAPHICS FROM FOCUS GROUPS

 Age at death

Cause of death

Where did child die?

FOCUS GROUP THEMES

 During the focus groups families were asked to share their experiences with the services they received and provide any recommendations to improve or create services for children and families. Increasing respite care services and improving access to hospice and bereavement along with creating comprehensive case management services were the predominant themes in both groups. Below are the themes and direct quotes taken from the family focus group data.

SERVICES

Respite/ In Home Nursing Care

Most families relied primarily on family members to provide respite care.  Due to the limitations of this method, such as limited training and availability of family members, most group members only asked for family assistance in emergency situations.

Due to the lack of respite care some families had innovative solutions:

“We had all portable equipment so we could go places with her.”

Others were not able to overcome the many obstacles:

“A lot of people couldn’t understand our family’s needs and we lost touch with a

lot of friends because we could never go out and do things.”

Even when nursing care was an option for respite there were still barriers.

“Having nursing care available for being able to go out was difficult—very expensive for an evening.”

“We had three 8 hour shifts a week, but often not able to fill those hours.  We needed extensive help.”

When the possibility of facility-based respite care was mentioned many families had some concerns that would need to be addressed prior to using this service:

“I would be concerned that my child would get other illnesses while at the respite provider.”

“I wouldn’t want to leave her in an institutional setting.  She spends too much time in the hospital—would need it to be home like.”

“20 minutes of every hour needed to be spent on therapies for our daughter.”

Case Management

The families of both focus groups introduced the topic of comprehensive case management services. This was not a service that was identified by the facilitators prior to the groups. Families stated that it was extremely stressful and overwhelming trying to navigate the many systems that were involved in their child’s care while trying to work, care for siblings and ensure that all of the needs of their child were being addressed. Some families had a case manager associated with their health-insurance company or MH/MR service provider. These families stated that the only assistance these case managers could provide were related to services provided by their own agency. They reported that case management needed to be comprehensive, giving multi-system knowledge and direction to families. They did not expect these services to take over the role of finding services for their children. They believed these services would reduce the daily amount of research and answer seeking they had experienced throughout their child’s illness.

 Some of the issues that families experienced included:

“Portable equipment was not available for 10 months because we had no case manager and did not know we could get it. Therefore we couldn’t really leave home without regular access to electricity.”

“We wish we had one person to turn to who knew everyone and the system that could refer us to the right places.  We did a lot of going without help.”

“Felt an advocate was needed to help guide family, talk in lay man’s terms, navigate system.”

“We wished we had support with all of the paperwork and insurance processing.” “There are so many other things taking up your time caring for your child and the emotional and physical stress of that.  It’s hard to have energy to also navigate the system.”

“Case managers need to think about the best interests of the child.”

“We need to be treated as a whole family—not just a special needs child. Our whole family needed support and counseling through it.”

Hospice and Palliative Care

Hospice and palliative services were experienced by only one family, but there were many thoughts she shared in the group.

“I would recommend palliative/hospice for terminally ill children. But currently a barrier to that is that many parents would want the option of pursuing any reasonable, aggressive treatment of disease while continuing to have hospice support and symptom management.”

The reasons she would recommend these service include:

 1. Any help available is good to be offered to parents & they have

the option to decide

 2. having an experienced RN involved and doing home visits was quite

supportive as Chris became less mobile and more complications with

pain management

3. Experienced professionals knowledgeable about your child, their pain and

ability to address was crucial

            4. Professional who could assess/help with medical equipment needs as

disease progressed was very supportive

5. Having staff involved who deal with issues of death are hopefully

at ease" with the natural reality of death and available for support

and anticipatory grief along the journey....grief starts with diagnosis.

They also can provide the supportive & compassionate atmosphere that parent/patient needs for quality of life

6. Hospice bereavement follow up helps to provide support to family for at least

13 months. Hospice staff often hear back from families, that just knowing that support was there is supportive.”

 As one mother stated:

 “Parents with a child with a terminal illness live in two worlds….we hope for the best but prepare for the worst.”

 Families who did not have hospice or palliative services had a range of experiences through their child’s illness and death. These are reflected in the following statements: 

“I kept thinking, ‘If I work hard enough on her treatments and therapy, she’ll get better’—but it was a terminal illness.  If I had realized that, I would have made different choices.”

“The hospital didn’t give our daughter morphine because of side effects.  Her last 6 hours were awful.”

(Another family gave pain medication as needed in hospital.)

“Because my daughter couldn’t voice pain; she wasn’t treated as if she had feelings.”

“We did not have any support or guidance for making DNR decisions.”

“Doctors weren’t honest with us about the severity of the disease.”

“We appreciated the honesty of the neurologist.”

“We weren’t given full information about the surgeries she had—we would have made different decisions.  She had many unneeded surgeries.” 

“If you asked 10 different people; there would be 10 different answers.”

“Sometimes people acted like since he wasn’t perfect it wasn’t as big of a loss.”

“We were told we could “walk away” from her if she was too hard to care for.”

 Only one of these families one had specific planning or counseling. 

“We saw a counselor (my wife and I) to make a decision about next steps and the aggressiveness of treatments.  We wanted dignity for the end of his life.  I think it was also important because then my wife and I were on the same page and wouldn’t regret the decisions we made.  We wrote down our rationale so that later we would understand our own thinking. We did not have hospice but our child’s pediatrician managed him at home. We were given meds to make him comfortable. Our pediatrician came to our house the night our son died. He scanned our other children for cancer just so we would have peace of mind.”

 Several families said they would have been very receptive and grateful to think through all of the issues and arrangements ahead of time. They recommended that professionals approach this by placing it in the context of “just in case”. All parents think about “just in case” anyway.

Bereavement/Support

These families experienced a variety of bereavement support from family support to professional counseling. However, most stated that they had to actively pursue resources due to the lack of referrals by care providers. They stated the importance of immediate support and referral following the death of their child. The most common source of referrals for families came from funeral directors

Families also felt that resources specifically for parents and siblings were limited at best.

One person had anticipatory grief support, talking to other parents who had been through it very helpful.

Many families stated that support groups were helpful but were limited and had restrictions or limited access.

Other support sources that families appreciated and found helpful were a cardiologist, a pediatrician, primary care physician who had come to some children’s funeral. Also, support from a neurosurgeon’s social worker, pastor, and staff at A Child’s Way; Western PA School for Blind Children and the Children’s Institute were stated as having been important to families.

Families also stressed the importance of compassionate employers throughout their child’s and illness through bereavement.

“We have to educate employers.  They don’t understand what you’re going through.

“I recommend that employers allow employees to donate unused sick days to parents of medically fragile children.”

SUMMARY

Respite Care

Some families did not even know this was a service. Other families had difficult staffing the hours they needed with qualified nurses. Although concerned about institutional respite all agreed that if the program was child friendly, with specially trained staff and as home-like as possible they would consider it.

Case management

This is arising as another important need for families. Someone to be available from the time of diagnosis onward to assist with navigating the medical system and refer to other community services the family may need. This service was added to the questionnaire following the focus group interviews.

Hospice and Palliative Care

Families stressed the need for professionals that are specially trained to help families with the end of life and palliative care of their children along with the decisions that accompany this. Most families agreed that they would have benefited from palliative and hospice care services. They also stated that conversations about the possibility of their child dying would have been helpful if introduced sooner rather than later.  Families stated that if they had assistance, they would have preferred to have their child at home or in a home like setting for end-of-life care.

Bereavement Services

Families stated that bereavement services specifically for parents and siblings were limited and difficult to find. Recommendations for improved referral information and follow-up support were also given. The need for employer education and anticipatory grief services were also discussed.

The family focus groups provided in depth information regarding the experiences and recommendations of families who have experienced the death of a child. This information along with the results of the family survey should be used to expand existing services and create non-existent services in the Pittsburgh region.